2.8 Emancipatory methods for qualitative researchers

Highlights

• Characteristics of peer research as part of a science of engagement in health research
• Discussion of the foundations of data collection, data management, analysis and interpretation
• Quality indicators of peer research

Introduction

The goal of this chapter is to speak directly to academics, researchers, health professionals, students, patients and communities who are looking to expand patient engagement in their research, teaching and practice. It relates directly to existing Responsible Research and Innovation (RRI), Open Innovation in Science (OIS) movements such as Citizen Science, Ashoka changemaking along with established Participatory Action Research and Community Participatory Research. In general these engagement methods are aligned with social innovation and social enterprise that work to democratize science by engaging citizens and communities as collaborators in research. The goal is to increase responsible, relevant and creative outcomes that lead to nimble, creative innovation in response to dramatic paradigm shifts in health and health care.

It is written as lessons learned from 30 years of research, innovation and evaluating a variety of research approaches while developing the science of patient engagement in research, practice and teaching. While most methods are qualitative in nature, they also work well in partnership with quantitative and evaluative methods. It focuses on information about designing and overseeing peer research projects. Links are provided to extend information about methods for teaching purposes. Patient groups who are interested in peer research might use this chapter to explore the potential for peer research.

This scope includes recruiting, training and collaborating with citizens with real life experience. The intent of this text is to embed the science of engagement into existing teaching and research agendas and teams. This is also an invitation to challenge, experiment and share your results as part of the interactive Manifold publishing platform, which is indeed a major step forward in democratizing health research.

Professionally trained researchers and students who identify as a patient or person with lived experience may find this chapter useful in their personal research or in training patients as collaborators in their research. Teams of health researchers may be interested in sponsoring or supporting patients to become trained peer researchers through existing community-based or patient engaged research training programs and courses such as Wellesley Institute in Toronto and the Patient and Community Engagement Research certificate at the University of Calgary.

This chapter is not a curriculum or training programme, but a resource to extend the current health research landscape. Detailed descriptions of field work, interviewing, questionnaires, focus groups and narrative research are included in the companion book, Grey Matters, a guide to collaborative research with seniors. Also included is a section outlining how community groups might develop their own research to address questions that are important to them and to provide input into developing new programs.

Characteristics of peer research

One can understand why people are initially puzzled by the concept of patients trained to conduct research. The power imbalances in health are protected by the scarcity of health care providers and the shadow of severe illness and death. Patients protect their access to their healthcare providers. Peer research is not about criticizing healthcare or providers, it reinforces the wisdom of patients in explaining concerns from a unique perspective that lead to suggestions for action. In doing so, it provides a competent patient voice in research and for the public. Patients want to improve healthcare and ensure healthcare sustainability.

To ensure patient research competence, the methods included here were tested and modified as part of research projects, with students, and, and as part of professional workshops and presentations. The resulting method differs from general qualitative research that describes experience and themes. The major result of the incubation process combined elements of action, narrative and grounded theory. This has evolved over 25 years of studying research. The final methodology is included in the final chapter but here we focus on the individual methods that can be used in a wide range of research including qualitative, quantitative, action methods to inform both theory and action.

We thank especially the researchers and mentors who were early adopters in both Grey Matters and PaCER and were willing to try new methods to overcome challenges in engaging patients in research. This chapter is based on over 38 research projects, and a retrospective analysis of many of them.

There are a number of common characteristics of peer and community research that apply to research, co-design, quality improvement and health technology assessment.

The following is an example of peer research that captures the character of peer and community research. This is a community driven peer project titled Understanding advanced care planning within the South Asian community.

Four trained peer researchers from South Asian countries were contracted through PaCER to identify the readiness of South Asian communities to become part of an advanced care planning initiative with AHS. Each PaCER was from a different faith community and all were women. As women, they conducted a women’s focus group to identify the obstacles and opportunities in conducting this research. The peer researchers, the project principal investigator and PaCER academics then met to discuss the need for a culturally appropriate data collection strategy for families and for the researchers within the South Asian communities.

We decided that any research involving end of life care should be done within families because the traditions surrounding death were generally led by the head of the family and each family member would want to be involved. A modified family research method was created to meet cultural protocols. The recruitment of families included a careful description of the advanced care planning process and how the research method would meet cultural and language needs.

Each research event involved two peer researchers - one in traditional dress, the other in western dress. They met the family in their home and brought along tea and treats. The lead researcher (the one from the same faith community) outlined the process with the family, asking if everyone felt comfortable and, in the process, introduced herself and why she and her family felt that advanced care planning was important - a personal family story.

Adaptations were negotiated, if needed. Once the head of house had negotiated changes and set out how all members would have a chance to speak, there was a narrative conversation about the concept of advanced care planning. Confusion and conflict with traditions were also discussed. All members - from grandparents to children - contributed. Other methods were not needed, as the data from families in all four faith traditions created very detailed discussions about family goals, the process of dying, and advanced care planning, from all generations present.

The results were compiled and analyzed after each family gathering and shared with the team to plan next steps. The PaCER academic staff and peer researchers met regularly to provide support and discuss any ethical or methodological findings. As we neared the REFLECT consultation, it became clear that the topic had generated a great deal of interest and a radio invitation was issued for a feast and a chance to be involved in the research findings.

The morning session consisted of the peer researchers and co researchers who had participated in the research to discuss the emerging ideas and plan for the afternoon session. The noon feast included faith-based and community leaders, community members and health providers, along with the sponsors. In the afternoon, the results from the group sessions in the morning were presented to the group, with active discussion and answering the main questions.

Highlights included a leader in the community who spoke for many, indicating his appreciation of the chance to be involved and, if AHS wanted an advanced care plan done, why not leave it at the doctor’s office on a computer that they could fill out and update as needed. An elder spoke quietly to say that she felt that everyone was familiar with computers and they could discuss it amongst themselves. A doctor rose to say she could help and then a faith leader suggested that they could hold discussions after services to show their support.

The family method produced deep and rich information. The results contributed to the team’s implementation plans and were published. The full report is available in PRISM.

The following table introduces us to the basic characteristics of peer research to set the stage for this section that highlights how peer research differs from most qualitative research in preparation for the following topics beginning with Emancipatory foundations that support action based research.

Emancipatory stance.

To call research emancipatory is to align the purpose and methods of research projects with a mandate to reduce obstacles that reduce patient and community capacity to flourish and be key stakeholders in their own health and health care. Why is an emancipatory social science needed at this time? The simple answer might be that emancipatory research provides a local and real life way of addressing what are considered wicked problems in health care. Wicked problems are social, cultural, or institutional problems that pose often insurmountable challenges to aging systems as are indicated in the following health care resources:

• https://globalizationandhealth.biomedcentral.com/articles/10.1186/s12992-018-0353-x
• https://uihealth.uic.edu/research-2/create-wisdom-wicked-problems-in-healthcare/#:~:text=What%20are%20wicked%20problems%20in,for%20a%20number%20of%20

Peer and community research is a pragmatic and local alternative to large scale search for universal principles. In effect, peer research is designed to identify social problems that are of concern to a population and conduct research that explains the problem in ways that suggest pragmatic solutions. It is here that they provide opportunities to tackle wicked problems such as systemic racism and discrimination, obesity and environmental toxins. Emancipatory research supports the rapid development of new models of population-based support, which focus on integrated health and social care for groups of patients.

Emancipation is fostered by computerized patient portals that enable patients to collect and analyze their own data and share data with others in organic ways that lead to more formal research topics as a form of patient emancipation. These portals also develop connections and networks of patients who share common concerns and open new channels for patient informed and supported research such as Patients Like Me where patients have become active in drawing attention problems in the medical gray zone of ‘no known medical cause or cure.’

Zamplo, a patient option to professional patient data management systems, is a revolutionary step to build patient capacity and open doors to innovative patient informed research and communication options. It was developed by the husband of a cancer patient who was misdiagnosed until fourth stage cancer. Instead, they collected her data, connected with research teams internationally and sought people with similar experience. In effect, they took control of her options for living, and in the process, Zamplo has become a global health platform and network that is used by researchers looking for patients who can recruit and explore new approaches.

Salutogenic

Patients seldom realize that their experience with health problems and health systems is knowledge. knowledge comes from facing the stressors associated with ill health and seeking wellness. As patients and communities learn about their problems, collect, curate and use personal health data, they become personal resources of their health and health care. This knowledge encourages them to build other resources related to wellness that they use in interactions with health professionals and health systems. Salutogenesis is the study of the process of managing stressors by using and building personal, program and system resources. It is also a powerful theory that informs the development of resilience skills and a sense of coherence that includes cognitive skills that build confidence that stressors can be challenged, manageability or coping strategies to face obstacles and a sense of meaning that it is worthwhile making an effort to face challenges.

Salutogenic theory informs the search for concerns or stressors that are of importance to patients and populations. Sense of coherence informs the study of explanations of these stressors or concerns by looking for cognitive, coping and meaning obstacles. Salutogenesis becomes a metric for ensuring that all explanations lead to potential solutions or salutogenic actions.

The study of pathology is the dominant discourse in health research but patients and communities are the source of salutogenesis that build capacity. By understanding their bodies they become motivated and capable to promote good health and prevent problems from becoming overwhelming. As technology influences our human bodies, salutogenesis will become even more essential if patients are to become active in technology development and implementation.

Deductive and inductive approaches

The majority of health research is done within deductive research methodologies but action research and grounded theory health research is inductive. The following explores the differences.

Deductive reasoning begins with a general interest based on gaps in literature about practice, theory or a population. This general interest is stated as a hypothesis or research question that directs the method and the sample size. Data is collected using a set method that can be either quantitative or qualitative. When all data is collected, it is analyzed, often with computer analysis to confirm (or not) the hypotheses. It includes either theory related to the original question or suggestions related to practice, policy or future research. ough data has been collected to justify the confirmation or negation of the original question.

Inductive approaches to peer research not only ensure a broad field of inquiry, but also provide a solution focus to research. The goal is to explore the main concern or topic widely, while constantly moving closer to the category that best explains the main concern. For non-academically trained peer researchers, this provides a simple process of analysis that is anchored by a clear goal. As categories emerge from analyzing data, patterns begin to explain the problem. This constant process of collecting, analyzing and interpreting leads to general conclusions and, in some circumstances, theory that explains the original focus or concern.

Peer methods tend to use inductive and iterative processes because these allow co-research participants to become involved in the research process. The analysis is done initially by the peer researchers and co design participants. Every time data is collected, it is analyzed by asking questions such as: What is happening here? (the action focus) - What caused this to happen? What was the outcome? What should we study next (planning).

As the categories are compared and tested, the process of data collection becomes more focused to look for dominant themes of the topic (when using descriptive research methods) or categories that explain the main concern (grounded theory). Inductive methods lead to rich interpretation in a short period of time because data collection and analysis is so focused. This also means that research needs fewer participants and is less costly.

Adaptable

Peer research, at the heart of its mandate, relies on the ability to reach out to populations that are not being heard because they have either given up or, more likely, because they are considered outside of the scope of standardized studies. Look at the time and effort expended by advocates to include women in clinical trials, even though it was apparent that women often manifest conditions in different ways. Both Grey Matters and PaCER were grounded in a teaching method that was experiential and based on the need to adapt all aspects of research, from co-design, eligibility criteria, recruitment and conducting and analyzing data, to finding solutions that would authentically include marginal populations in implementation and evaluation of results and recommendations.

It is important to adapt research methods to engage age and condition specific groups, culture, tradition and economic populations. In the PaCER program, we have encountered many examples of this. Research with young people with sport-related concussions was difficult because so many people felt that they were responsible for the injured youth. When a group was finally recruited, the research was developed with the youth to engage them (pizza and lots of soft drinks). Indigneous focus groups were conducted with a negotiated combination of ceremonies from different tribes. Conducting research to identify personal journeys through chronic illness could only be done by drawing their personal journey so they could see their journey as distinct from the clinical pathways. Women researchers conducting research in Muslim communities required careful planning and adherence to gendered relationships.

We are at the starting line of the race to adapt research methods to enable groups not generally included in research. Children, for example, might be observed during free play to research their reactions to digital devices and adaptive equipment. Immigrant seniors seemed to enjoy going to an ethnic restaurant to be part of a focus group. Card games are being adapted to collect data about concepts and preferences. Text messaging might intrigue teens who are experiencing new situations or new expectations.

The need for peer research training among unheard populations will increase as we address the need to create bridges between marginalized populations and mainstream research in ways that allow parallel focus and methods. Though it is difficult to adapt existing methods while ensuring quality research, we have seen that an inductive research is essential in laying the foundation for a flexible and adaptable research methodology of the future.

During the first iteration of the peer research curriculum, students were part of a yearlong internship that introduced theory, methods and competencies as part of designing and conducting a research project. Each group of students worked with their target group and each ethics proposal and research project reflected the culture and conditions of the target population.

As peer research is adopted by innovation teams, adaptation, especially in the prototype development and testing will be essential. Good design thinking is about learning about the potential diversity and being able to adapt to new populations.

Narrative

Narrative data collection is the natural process for peer research, where peers engage in conversations that share and explore stories. It is natural to share concerns and it is also natural to use shared stories to explore potential solutions to the problems. The use of a story template helps peer researchers and participant co-researchers work with stories as a legitimate form of data and knowledge. Narratives of change are becoming more popular in emancipatory research and implementation science. These stories open the door to narrative futures and forecasting solutions. Design thinking uses story formats throughout to produce rich and flexible data that is iterative and focused on an end product or process that solves problems.

During recruitment, co-research participants learn that stories are important. They have time to think about stories that are related to the topic. They are ready to engage not only in telling stories, but exploring them with others to find meaning.

Stories include other narrative forms such as metaphors, properties, styles, context, and consequences, which help clarify why stories are grouped into categories. Stories are interrogated using standard questions that reflect the properties of stories, and these make it easier for real life discussions and in-vivo coding. The properties of narratives are extremely useful when selecting the core category and finding relationships between categories and the main concern or topics during shared interpretation sessions.

Finally, narrative is embedded within innovation and marketing research that tells us clearly that implementation strategies that include a vision conveyed through stories have maximum impact and increase uptake (Davidson, 2017).

In-vivo data and coding

Because the co-research social innovation study (Chapter 2) set out to involve social innovators throughout the research process, we soon faced the so-called glass ceiling of analysis. The ceiling of co-analysis occurred as I used the concepts, language, philosophy and theories of my basic discipline when coding data and emerging categories. I had not realized that I was doing this, but it soon became apparent that the co-researchers felt sidelined because they did not share my academic language or culture. It seemed to suggest they, the co-researchers, were not equivalent to academically certified researchers.

When we used the titles of stories as category names, we were able to re-engage in shared analysis. I later realized that categorizing data held insidious assumptions that separated participants from academics. Early in PaCER, we often heard that unless peer researchers can conceptualize or create theory, they can’t be considered researchers. We had to find a way to validate the knowledge of citizens who held real life data and the ability to work with real life situations. Luckily, my background in community and social innovation had built my trust in the wisdom and competence of those who rely on services. All we needed to do was to find an alternative to conceptualizing using academic theory to code data and create themes and categories..

We began with classical grounded theory to find ways around this chasm between conceptual and real life analysis. Step by step, study by study, we have studied alternatives, using the iterative cycles of data collection and analysis to test new approaches that could compensate for this lack of academic theory. Community-based participatory research (CBPR) and participatory action research (PAR) use plain or in-vivo language of everyday life to contextualize experience to reflect local culture and organizational structures. This works well within local contexts because the research is owned by the community, but we were looking to increase the validity of real life analysis to gain recognition among health researchers.

Patient experience can be coded as story titles or properties. The language of peer research may not be conceptual from a disciplinary or theoretical foundation, but it does lead to deep, action oriented categories of real life experience. The following titles of peer research are examples of in-vivo theories:

• Losing our stories
• Out in the cold without a clue
• Hiding undiagnosed arthritic pain

In PaCER, the use of narrative and plain language has been well received when publishing in professional journals. When the reason for experience-based concepts is explained, most academics felt it was appropriate. It is important to note that peer research has been analyzed by professional and academic researchers who use different labels and may combine findings in different structures. It is a strength that in-vivo incidents and coding from different perspectives, suggesting that peer research and academic needs can be met within a story based analysis.

Action orientation

An action orientation is the hallmark of emancipatory social science. Experienced-based research tends to focus initially on people’s concerns. Sharing concerns naturally leads to suggesting ways to deal with concerns. The majority of emancipatory social science, no matter the population, has focused on systemic discrimination in order to inform collective action to reduce or resolve the populations’ concerns within the systems they rely on or hope to find..

Throughout the 30 years conducting and teaching citizen research with social innovators, seniors, students, peer support groups, and patients and communities, the common question of participants was, ‘Will this make a difference?’ This concern aligns with action research such as community-based participatory research, participatory action research and classical grounded theory. Participatory and action research was, for a long time, considered non academic. This was in part because these approaches deliberately set out to address common concerns in ways that explain, resolve or reframe the concern. I encountered this skepticism from my PhD committee and even from partners who felt that action research was not objective because there was a political goal.

Regardless of the research tradition, it is the engagement strategy of peer research, created by seniors and expanded by patients, that caught the imagination of the research community in Calgary. Researchers of all types associated PaCER or peer research with an engagement strategy: SET-COLLECT-REFLECT. In team meetings, people seemed comfortable with the simplicity and pragmatism of a research approach that included citizens in beginning research by consulting with citizens and resources to identify the focus of the study (SET), engaging citizens in collecting and analyzing data (COLLECT) and gathering to discuss the findings (REFLECT).

While some welcomed the pragmatic and real life theories of action, others felt that citizens were over-reaching. There was a concerted effort to move back to more traditional thematic research with fewer action oriented suggestions.

Group focused

Group research was first proposed by seniors in the Grey Matters Catalyst grant. They wanted to create a focus group method that provided time to understand the topic, share stories and discuss common concerns. The resulting peer research takes more time, promotes cross talk and creates shared meaning. These group sessions create common goals and ownership of the findings. It is perhaps the most effective peer method, producing not only data but shared meaning and in-depth collective stories that carry meaning.

Originally, we saw the magic when seniors became collaborators of ideas, a network of research teams working together to build strength in diversity. But little did we realize that the magic of working in groups would unleash the power of improvisation. As groups shared stories about the present and the past, the interaction sparked new stories of change, foresight and solutions. It is doubtful that improvisation exists without open discussion among diverse participants. These groups seem to rely on freedom and cross talk that builds trust and a common mission of making meaning of diverse experiences.

Group research is used to set priorities, collect a broad range of stories to inform the development of categories, reflect and contribute to findings that suggest actions based on the findings. In a recent training cohort, the internship used just group research, because each group was an efficient way to consolidate input quickly and effectively. The SET consultation team captures the energy of connecting with the community to weigh options and choose their focus and the methods for the study. COLLECT provides a rapid way to collect, analyze and plan next steps using a similar group format with different perspectives. This is especially useful with small online groups. REFLECT re-engages the SET team to respond to findings, next steps and action.

The distinguishing characteristics of peer research groups include the length and openness of the groups, the preparation of the participants who act as consultants, the lack of set questions, and participants who are encouraged to contribute ideas to emerging stories.

Participation from a lens of co-design

While the format used in peer research has become aligned more formally with narrative data and the analysis structures of classical grounded theory, the principles of participatory action research remain untouched. Today, the terminology for participation revolves around a number of ‘co’s’ which compete for engagement space: co-creation, co-design, co-production, co-research. They have been adapted and defined to meet specific projects and purposes.

The following is a short summary of these definitions, with a summary of their use and those they engage with.

Co-creation appeared first and is, by far, the most researched, with a history of theoretical publications. It grew from the early days of capitalism, when companies were looking for new products to entice consumers to buy. Customers and inventors were welcomed to ‘create’ new products and services. The field of innovation grew rapidly, and professional innovators moved quickly to take the lead. Today, customers and people with niche needs are still part of the team, but are less involved. The power has been absorbed by research methods that involve end users in developing ideas and concepts for the client to commercialize. These include using social media, online communities, workshops, discussion groups or in-depth interviews. Verleye’s (2015) research on the co-creation experience clarifies not only the history and practice of co-creation, but the motivations of customers and inventors engaged in designing products and services. The following are some of the Design thinking methods of co creation.

• Existing social media platforms that can be used for market surveys, participant surveys or discussion boards. For example, PaCER used existing online mail outs to recruit for research projects.
• In person workshops or focus groups, which capture ideas from interacting and sharing ideas in groups that last several hours to a day in order to maximize creativity and productivity. Peer research focus groups tend to follow this model, where participants are prepared ahead of time, encouraging creativity and problem solving. New fields of narrative research that use story formats that are future oriented work well with innovative commercial workshop methods to introduce future problems/solutions.
• Online communities are not only a game changer for commercial co-creation, but for research Patient Reported Outcome Measures (PROMS) and Patient Reported Experience Measures (PREMS). Many software products are available commercially and are widely used by online health communities to target conditions and service needs through online networking. PaCER uses these mailout features to recruit for participants. McCarron et al. (2018) canvassed many health related organizations to email out the survey achieving a large sample and excellent qualitative data, as participants wrote notes related to the questions.
• Small groups are used in commercial innovation projects to engage consumers in focused conversations, but these tend to be short and are difficult to manage because of the time constraints.

Choosing models of participation for citizen science and peer research

In concluding this section, we return to the levels of citizen science to describe the range of co-research related to the engagement of patients and communities in research. The basic approach is simple. Academics, mostly in the natural and environmental sciences, recruit citizens to collect data, analyze or even conduct research. Many of the projects are ongoing and become collaboratories, that are networks of researchers and citizen scientists enhancing and extending the reach and relevance of their research.

In the introduction to Section 2, there is a comprehensive table outlining the five levels of the four most common citizen science approaches (link to table). It also includes the International Association of Public Participation, which is a commonly used guide to engagement in governance and academic projects. The following is a summary of levels of engagement in citizen science that may help researchers identify the level of engagement they aspire to.

1. Contributive: The researcher or team recruits citizens to gather local or personal data, but the research is managed by the researcher who shares the findings with the citizen scientists. This is the most common form of co-research in medicine where patients provide data.
2. Collaborative: Citizen scientists bring their own resources and abilities to the team, for example, using personal computers or finding and analyzing local specimens. This has been a staple of citizen science that expands resources for collecting and analyzing data.
3. Co-created: Citizen scientists could suggest a research project or become involved in the design, planning of a study. This is the model of the patient partner advising a researcher or team. It is becoming more popular as large, longitudinal studies develop research collaboratories that include patients and community members.
4. Co-produced: Citizens scientists are involved throughout the study, from design to report writing. This is the model of peer research promoted by community-based participatory research, where citizens act as research assistants who are trained to collect data research within hard to reach communities.
5. Collegial: Here the citizen scientist is considered a colleague with the ability to design and conduct their own research with support as needed. They may also create their own products, or make policy decisions based on research data. This is the peer research model, where citizen scientists either have research backgrounds or are trained in engagement research. They work as part of the overall project or grant and are given responsibility to conduct a portion of a grant independently, sharing ongoing findings with the team or being contracted by a research team to conduct research to ensure patients are engaged.
6. Independent or peer led research: This consists of research done by communities or patients who either have research expertise or are trained to conduct contracted peer research. They conduct research that is of most concern to them when other options are not available. In medicine, this has been called patient led research and is growing, as patients attempt to address conditions with unknown causes or cures.

People involved in all forms of collaborative research feel they are part of it, commit to using the information, and support uptake. In the future, the preparation to become a co-research participant might include some basic online stories and the use of peer research reports. Co-researchers are motivated to become part of dissemination, implementation and uptake.

Options related to peer research and citizen science

This is a extensive collection of engagement methods following the trajectory of most research:

• Co-design or SET that identifies the topic of the research from a patient perspective
• Collecting data or COLLECT using interviewing, group research, field work and participant observation and Mining unstructured public data
• Data management
• Data analysis that includes content and thematic analysis, narrative analysis, discourse and framework analysis
• Interpretation using the categories above to connect to levels of theory and implementation

Co-design or SET

SET is the equivalent of the open coding in classical grounded theory that takes place in academic research, prior to the ethics proposal. It sets the focus of the project within the context of the systems, politics and values that impact the patient experience from their perspective. SET can be done by a trained patient researcher, a small team of patient advisors supported by a patient researcher or an academic lead familiar with peer research who supports patients and community members. The goal is to collect and categorize a number of potential research ideas that reflect the main concerns of patients or communities as an informal consultation.

• Consultation with experienced patients and community members through informal consultations in person or online
• Online chat groups of all kinds to identify the concerns being discussed
• Websites related to the general topic to identify program goals and consumer comments
• Grey literature related to political, policy, advocacy groups
• Protocols related to the topic
• Reading and analyzing patient experience articles from open access journals

Depending on the resources available and the time, choose from the above options. Keep the information about options for research using a simple format or framework, so that everyone is consistent to support creating topics of concern. When you have a range of concern options identified, write each on a poster that can be shared in person or online. If you are working as part of a research team, share the posters with them ahead of time.

A SET co-design team of patients and citizens meets to discuss and prioritize the options. The team can be drawn from your consultations or from an independent collection of patients and community members. This in-person or online group discusses the categories, weighing not only what is most important but also what is feasible and impactful. Once one or two concerns are identified, they are prepared for the team (the grant development team or early stage research team). The report includes politics related to recruitment, advocacy and community inclusions, the ethics related to engagement and equity, diversity and inclusion, and suggestions related to methods. This is then discussed and included as part of the grant or implementation plan.

Collecting data

The specific methods for collecting data are presented separately although in peer research, data collection is combined with analysis because of the links to classical grounded theory iterative cycles. Iterative data collection is actually a cycle of data collection, analysis, memoing and shared analysis, but for this discussion of qualitative methods for peer research, the elements of the cycles are separated.

Figure 8.3 describes the four basic ways to collect data in peer research: individual interviews, group research, field work and mining public and unstructured data. This figure summarizes the data sources, the use of stories, and how to track data collected using basic field notes. This is done to lead into the next section that locates and describes these methods within the engagement strategies.

This following section follows up with specific details about the data collection methods summarized above.

Interviewing

The initial study of interviewing for peer research took place with seniors who were taught open ended, semi-structured and standardized questionnaires. While seniors felt secure with structured and standardized interviews, they were disappointed with the results that were difficult to apply to their research and were difficult to interpret beyond counting the number of responses. The scope provided by open interviewing was more difficult to analyze, but provided useful information that could be applied to their research.

Citizen Science interviews often employ structured or semi structured interviews that ensure that the citizen scientist collects the data needed for the research protocol. In this situation the data is collected in ways that allow for computer input and analysis. Even formal interviewing requires training in being able to engage patients and communities in the interviews. For more information on types of standard interviews that have been developed by seniors refer to the Interview section of Grey Matters

Peer research interviews are more likely to be open, narrative conversations about specific experiences. A peer researcher uses their personal stories to enable the participant to feel comfortable sharing their personal stories when appropriate. This is difficult for an academic to do because they seldom share life experiences with participants. In peer interviews, participants are prepared ahead of time so that they know the topic and the topic was chosen by patients. That also means that the peer researcher has personal experience with the topic of concern. The purpose is to collect stories about what happened to them, and what could or should have happened.

You begin with an open and curious stance, inviting the participant to share their experience of the topic or main concern. You learn to listen to and capture stories by taking short notes of incidents that are story fragments about the topic. Incidents and story data are entered on the story templates during the interview, or you can wait to use the template later from notes or audio or video recordings.

The skill lies in creating a conversation of equals, interested in exploring experiences about a common concern or topic. You show interest in learning more about what happened and, as in conversation, by prompting to hear more elements of the story. Stories lead to other stories on the topic and open up questions about what happened and why.

The nature of narrative conversations invites the telling of whole stories. Whole stories provide space for exploring meaning. The peer researcher is curious and interested, but avoids any reinforcements such as ‘good,’ ‘oh my,’ or ‘me too.’ These reinforcing statements lead the participant to think that they are answering an implied question and they will search for the right answer or struggle to figure out what is expected in an answer. Learn to allow time for people to think. If you feel you need to provide support, a gentle prompt related to the story often works. This is where the story properties come in, you could ask ‘who’ ‘where’ and ‘when’ questions, but try to avoid ‘why’ questions until the whole story is revealed.

The problem is that the use of questions is often reinforced by ethics committees who see questions as a way of ensuring that research stays within safe boundaries. In medicine, patients are so socialized to being asked questions by professionals that the response is automatic, strong and visceral: What is the right answer? What will happen if I don’t answer correctly? Why is this being asked? What will happen if I answer the wrong way? How do I answer without criticizing my healthcare provider? Who will find out what I have said? These are not idle concerns. Patients spend a great deal of time and energy anticipating questions about their health and how to answer them, and they bring these expectations with them when they come to research. This is why the story format, while it may seem awkward in a health context, provides openings to explore explanations and solutions.

At the end of a narrative interview, you celebrate the stories as important knowledge about the research topic by asking what the narrator has learned by telling the story and what they feel they have learned about themselves and the topic. . In summary, a narrative interview is not a series of questions but an integrated and meaningful conversation that leaves participants engaged and acknowledged.

Group research as data collection

The group research method was created by seniors who were fed up with focus groups that lasted an hour and asked members to respond to set questions with no opportunity for cross talk. The results were seldom shared and when they were, they didn’t know how to respond. The full curriculum for groups can be found in Grey Matters, Chapter 5 and Appendices 4 and 5. The power of the group is also embedded in SET and REFLECT consultat ions which guide the choice of research topic and consolidating findings.

Group research is the magic ingredient in peer research. Groups ground engagement and consolidate a conversational sharing of stories to create common stories. Peer research aligns with JEDI principles of justice, equity, diversity, and inclusion. In particular, the diversity of peer research groups seems to foster common stories that are more powerful because of the diversity of experience. In a three-country study of women immigrants with suspected cancer, the SET and COLLECT group were conducted in Russian, Portuguese and Arabic languages, and when the stories of the three groups were combined after the REFLECT stage, the commonalities stunned us all. All women felt Canadian physicians were more clinical and less supportive, especially when it came to physical testing and conversing about feelings about cancer in spite of very different backgrounds and care experience.

Similarly, in an advanced care planning study in South Asian communities of Calgary, the initial data collection included a peer researcher from one of the four faith and ethnic communities and, as the results were discussed, the similarities led to powerful recommendations that were shared by all four traditions.

A final example is of indigenous cancer prevention studies that included two treaty-based nations, an urban mixed indigenous group and a metis community. The focus of each of the groups reflected their different cultures and traditions. Each had similar concerns about the lack of cancer survival stories that led to hiding early cancer signs. The lack of stories of hope increased the devastation when patients were separated from their families for late stage treatments that reinforced the notion that cancer was unbeatable.

As the use of JEDI becomes more ingrained in peer research, groups will become more involved in achieving equity because the research will lead to more equity, diversity and inclusion of experience. Explanations of concerns and common solutions benefit from the ability to study a diversity of ideas that generate an almost improvisational energy during group sessions. The more experiences, the deeper the data possibilities. Group energy builds not only results but shared ownership of the stories. Some of the most exciting results have occurred when the groups work to reconcile differences. As the group negotiates a common story that reflects the diversity of the group, it generates space to explore new explanations and solutions.

The following identifies the data collection aspects of groups. Many peer researchers like to work as a three person team who take on the following roles.

• Facilitation is done ‘sitting down’ in order to be seen as a group member. Facilitation starts conversation, and supports and redirects conversation when the group stalls. This is not a leadership position - it follows participatory action research principles that state all group members are equal and bring differing but valued contributions. The facilitator might say nothing for an hour or two when the openness and respect for ideas and diversity is evident.
• Flip charts are created by the flip chart recorder, who stands up so that everyone can see as the data is recorded when the group is in person. The recorder records using a visible chat function when working online. Either way, the pages become the group data record. The flip chart person records conversation in small incident units. The names of contributing members are not included, unless the group requests that they be noted. The flip chart person is responsible for the integrity of the data, checking to make sure that the incident notes on the flip chart are accurate. This person also identifies when incident notes are turning into stories. These stories may be recorded on separate flip charts to allow groups to think in stories. The flip charts of stories are used for group analysis at the end of the day.
• Process recording is done by a team member trained in recording what is happening in short incident notes. This is not a recording of content, but the nature of the conversation, ideas that resonate or separate the group, and the emotional connections that grow as part of the process. This provides the context and relationships within the group.

Groups are often involved in co-research analysis that informs important research decisions - SET: choosing the main concern or topic for the research; COLLECT: comparing categories to find the core category that explains the main concern; and REFLECT: confirming the findings and suggesting solutions and next steps. The afternoon ends with a summary and reflections on what they have learned about themselves and the topic, and what they think might be needed next and how they can help. The day ends with a short evaluation of the day and the process with invitations for next steps.

Focus groups not only create a consistent collaborative research environment, they also create motivation to continue to be involved in other peer research and often an interest in becoming a peer researcher.

Fieldwork and participant observation

Observing and taking notes is an essential skill, not only for fieldwork or ethnographic study because it highlights what the observer considers important while unpacking the bias of the recorder. These skills are essential for interviewing and group work, or any situation where information is collected by observers. Fieldwork is used at the SET stage of consultation with key informants and visits to community and clinical resources. The ability to observe and take short notes about possible concerns that might become research topics, ensures that consultants don’t feel that they are being researched. This is important because research per se must occur after ethics is approved.

In data collection, we focus on ‘participant observation,’ which typically means that one person participates and observes at the same time. In peer research, observation is taught in pairs so that they can share notes and discuss the impact of personal values on what people look for and record. The goal is to establish inter-rater reliability, which is achieved when observers are aware of their personal biases and expectations and can focus on what is actually happening instead of what they expect to happen. This takes time to achieve but is easier when one person observes and records as the event unfolds and the other person participates in the event and records after the session. This allows the participant and observer to compare their observations from two perspectives. This exercise teaches about research and the need to be open and not be drawn into looking at action through biased eyes.

This method was developed as part of a PaCER internship research project at Wellspring Calgary. The SET consultation identified that the best and least intrusive option for gathering data of classes and groups for cancer survivors was to observe activities and casual groups. The research team who were members of Wellspring and the academic supervisor worked together to create a way for one person to observe and record while maintaining a discrete distance. The other person took part in the group and recorded their experience after. This is an example of adapting data collection methods to suit the nature of the community setting.

Participant observation is also the most difficult process to get approved in healthcare settings. Staff are often uneasy about patients watching healthcare being delivered. While it may be difficult to gain access, observations in clinical and community settings come with the expectation that the write up of the observation is shared with the staff liaison to discuss findings and to share the summary with any staff who are interested.

Shadowing doctoris often used to enable students to see first hand the roles they aspire to. A similar process occurred when students in the PaCER program were able to act as research assistants in a peer research project in an intensive care unit (ICU). Their experience led them to choose to research that considered transfer from the ICU to the step down ward. Shadowing is an excellent way to study reactions in hospital or clinical settings, and sometimes the best way to achieve this is to arrange for a patient, who has permission, to observe their care and record what they experienced.

Mining unstructured public data sources and artifacts

There is an explosion of publicly accessible information, personal beliefs, opinions and experiences through the internet and related social media platforms. It opens new meaning to the grounded theory contention that ‘all is data.’ These new and widely available data sources are unorganized and require careful attention to ensure data quality, especially reliability. Data mining is not new in marketing, public opinion and values research, and with more interest in citizen science, these new forms of data will become more a part of more formal co-design and research.

Some of the public sources of information include:

• Interactive news publications, customer generated online comments
• Social media platforms such as Facebook, Twitter, LinkedIn, Reddit
• Video streaming websites like Youtube and photo sharing platforms like Instagram and Flickr
• Medical records and health chat rooms such as Healthful Chat, Patients Like Me, Health Experiences, and Health Talk along with an increasing array of professionally led open chat discussions

These data sources require the use of peer researchers familiar with internet practices because they have more expertise in assessing data quality, reliability and relevance online. Accessing these data sources may also require the assistance of those familiar with the target online resources. Online resources may be a good place to begin co-design, because the use of media platforms for data collection is a growing field and it doesn’t require ethics approval. The use of crowdsourcing has been used to access simple, low-tech, inexpensive solutions to fight COVID-19. The use of online technology in citizen science is informing all levels of data from individual protein folding online competitions to artificial intelligence networks that are informing national COVID-19 planning teams. Clinical studies are adopting crowdsources to extend sample diversity and hard to reach populations.

Another major difference with peer research is the need to adapt data collection to overcome the reluctance of patients and communities to be ‘researched’. There have been significant successes using games, activities and partner exercises developed by and with community members to increase the scope of engagement.

Data management

All data collected needs to be managed and protected. Figure 8.4 is a short summary of some of the options that have been proven successful in peer research. Each management approach requires training and oversight to ensure that data is held in secure storage according to ethical standards. Each of the data management options have assets and obstacles in peer research and some adaptations are included

Whenever possible, students and new researchers should ensure that there are audio recordings of their work so that they can refer to them to relive their experiences and to evaluate their style and think about how to interview better. It also helps to learn to listen and record in short incident notes or story templates.

The speech transcript was introduced in Chapter 2 as a way of capturing the patient voice with the rhythm of speech. Also in Chapter 2, there are numerous examples of speech transcripts that produce a natural speech rhythm, which improves memory and connection. Reading speech transcripts produces a feeling of hearing the person tell the story. This method is useful in reports developed for patients and communities and has been accepted in peer reviewed journals. A short example of a speech transcript might be:

When I am in a new group

fear strikes

I tend to attach myself to someone who looks friendly

I can then follow their lead until I feel safe.

Short incident notes and stories are the preferred method of managing data in grounded theory research and other participatory and inductive research methods. They can be collected or produced on incident cards to increase the ability to sort and compare incident notes during constant comparison. It is easy to take pictures of the cards in a category for data tracking. Notes can also be added on the back of cards. I have tried to do this using online organizers and would encourage their use if using cards seems low tech.

Narrative data collection, using story templates can be produced during data collection, from short notes or by listening to audio recordings. When seniors found it difficult to transcribe data or take short notes, they suggested using the story templates to manage data. It was easier to use the story templates, filling in the spaces as they listened to the tape repeatedly. It also has the benefit of identifying gaps in data collection. It is common that the storyteller misses important information that describes the initial context or in the consequence of the story. Many participants enjoy seeing the story being recorded on the templates as it takes shape and have commented that it makes the story real to them and valued by the researcher.

The framework method for data management creates a structure at the beginning of data collection to enable researchers to enter their data quickly and compare entries in order to build analysis structures. There are computer software options to move through the stages from initial categorizations to final reporting. This framework research by Gale et al. (2013) is an excellent source of framework analysis in policy research.

As a tool in peer research, frameworks organize and manage data into a consistent matrix consisting of columns organized by basic themes that can be redefined. The rows represent cases in framework analysis. The cases are organized according to the structure of the research such as different researchers in a team, different disciplines in a team, programs according to focus, stage in treatment, funding formats, etc. The resulting matrix reflects the unique needs of the research

Data analysis

Data analysis is the process of taking data apart into pieces that can be questioned and sorted into similar categories, recombining these pieces of data to capture new meaning about the topic. Constant comparison of incidents leads to coding or naming the categories which represent the collective meaning of the incidents. In peer research, categories generally include actions or descriptions of what is happening. Qualitative research in general is more descriptive of what the experience of the incident was like. Peer research analysis is encouraged to remain grounded in in-vivo language and codes for categories to ensure that the research remains in a patient voice and captures patient experience.

Note that statistical analysis is not included in the list of peer research options, although there are computerized thematic analysis tools that are easy to use that could be adopted by peer researchers. Scoping reviews are also not included, although McCarron et al. (2020) worked with three collaborating patients to conduct a scoping review of patient motivation for interviewing. There are several articles published with the patient collaborators relating to the possibilities of training patient colleagues to conduct a variety of research methods. Refer to Chapter 5 for more details.

Figure 8.5 outlines the major data analysis techniques used in peer research. In raw data, the units chosen and the codes of potential categories all use the same language.

Content and thematic analysis

The majority of qualitative health research uses content and thematic computer analysis where data is sorted using pre-established category codes created by the researcher. Most current computer analyses allow for the emergence of other categories. Computer content analysis of social media has become popular in quantifying patterns and categories of values, preferences and expectations. There is a broad range of content analysis software (solutions for public and unstructured text data in chats, comment sections, news, blogs and Twitter.

Peer research methods for general qualitative studies have used content analysis, but may be challenged by the use of theoretical coding processes that require advanced academic training and experience.

Regardless of the process or the type of data, content or thematic analysis bridges between talk and meaning. Whether that meaning is presented in descriptions of experience, stories, strategies or new ways of doing things, the goal is to use data to confirm or uncover meaning.

Classical grounded theory analysis

While classical grounded theory was the research method used during the innovation and incubations stages of peer research, Holton and Walsh’s (2016) book provided a modern take on classical grounded theory as a method that can be used with many research traditions. This book is recommended for those who have not used grounded theory previously because it is applicable across many disciplines and research traditions.

Classical grounded theory has been adopted widely as a part of qualitative research analysis to increase rigor and concept development. The analysis tools used most widely by qualitative researchers are iterative analysis cycles, open coding and constant comparison of data. Iterative analysis not only ensures focus, but increases the potential for unplanned concepts and theory to emerge.

Classical grounded theory analysis consists of creating short incident notes from whatever data collection method is being used. Whatever the data, the first analysis question is: ‘What is happening here?’ A more traditional question, if you are focusing on early abstraction of concepts, would be: ‘If this is my data, what am I studying?’

Analysis exists as part of constant comparison of the incidents that lead to categories and eventually theory. These categories are named or coded according to the shared meanings of the incidents included in the sorted categories. If the new incidents don’t find a home in any of the categories, a new category is created and named. Categories are expected to divide or combine through this process to refine their relevance to the main concern of the study. Throughout this process, the definition of the main concern or topic is being refined and one category is selected that best explains the underlying structure of the main concern or topic.

The Holton and Walsh book was instrumental in combining classical grounded theory with participatory action research principles of the peer research’s engagement strategy.

• SET: An open coding process that collects and categorizes concerns of a population. The analysis of open coding iterative cycles, as part of a classical grounded theory study, is done after ethics approval. More recently, In peer research, the mandate to empower citizens in the selection of the research topic opened opportunities to use open consultations with patients, community and clinical services and online platforms to create categories of concerns.
• COLLECT: This includes the iterative cycles devoted to collecting, analyzing, memoing and planning next steps in the research process. This is done to focus on explaining the main concern to find solutions. In peer research, the iterative cycle includes similar functions of collecting, analyzing and memoing that are the functions of an individual peer researcher who analyzes their particular data collection events. However, the individual analyses are shared with a peer research team to combine and challenge emerging categories in order to plan the next cycle. This ensures both theoretical sensitivity and increased rigor that comes with interrogating emerging categories as a group.
• REFLECT: This includes interpretation and theory building. Theory is pragmatic, it consists of a core category that best explains the main concern. This core category also coordinates other categories in finding solutions to the main concern. In peer research, the best choices are presented to a REFLECT focus group, which confirms or modifies the choices from the iterative data collection and analysis cycles and the selective coding to identify the core category. This enables patients to confirm the findings and to be involved in identifying solutions and options.

Grounded theory analysis is ideal in new areas of research, conflicted or confused social organizations, or in tracking social innovation, because it adapts easily to unexpected information. Grounded theory is particularly effective within organizations where the roles and relationships are the focus of study.

Narrative analysis

Stories are the currency of communication, and they are the foundation of data analysis in peer research. Narrative focuses on the ways in which people create and use stories to interpret and explain daily life and world views. As such, narrative analysis includes a wide range of options, depending on the profession or discipline. Anthropology and ethnography gravitated early to use stories to capture knowledge about people, their culture, and adaptations. Sociology and nursing produced ways to analyze the content of stories, and psychology specialized in ways to understand how people form meaning in their lives through narratives. In general, narrative analysis helps make sense of past experience. It organizes our current experiences and uncovers the values, expectations and structures that lead us to share stories with others to create common stories and narratives. Narratives of change and forecasting narratives focus on the anticipated futures that emerge from story analysis.

The narrative analysis as part of peer research is based on collecting data incidents as story units that are analyzed initially using story templates. These templates organize data according to the context of the story, applying the questions about story properties - the who, what, where, when and how - to probe for ways to categorize data. The steps, or plot of the story, provides the strategy, or expected process of the story. The consequence includes the expectations, outcomes and impact of the story. In addition to the stoy, a range of narrative functions are identified including metaphors, mottos and slogans, roles and values.

The early analyst focuses on the apparent questions - the who, where, why and how - but as they gain confidence, they become attuned to the subtle nuances of individual difference and style. Narrative analysis aligns with grounded theory because both are looking for explanations of what is happening in the data. In narrative, the question ‘what is happening here’ leads naturally to the properties of the story: who was involved and what actions were in play. When asking how the story unfolds, we are looking at the dynamics of the movement that unpacks the power of using the story in analysis of the entire incident’s motivation (why did this occur), flow (why did this happen next), highs and lows. The individual elements of the story are also used to tease out the subtle actions, shifts in focus and meaning. The story invites the analyst to repeat - what is actually happening here and why? This iterative process leads to a main story or script that best describes the main concern of the research. It is also possible to use the main story to confirm related thematic analysis. The goal of narrative is to provide real life data of actions in the past and propose actions for the future that are understandable to patients, health care professionals and the general public and policy makers.

Discourse analysis

Discourse analysis focuses on analyzing language, especially the language of power and the powerful. Direct access to speech acts as data that identify pronouns, verbs, metaphors and role descriptions. There is an example of discourse analysis of stories in autobiographies in the RESOURCE section. Discourse has been particularly useful in emancipatory research because language and the structures of language uncover both sources and impacts of systemic discrimination and therefore identify sources of power and wealth or privilege that can be used to confront power.

The use of JEDI provides a framework for classifying language used to promote systemic power tropes that reduce access to justice, equity, diversity and inclusion within the study of policy and practice in health systems. Discourse analysis is suddenly a viable option because of public access to social media documents, program and policy statements, and advertising. Critical theory research uses discourse analysis to detect power imbalance and systemic obstacles. Discourse analysis also identifies personal roles in organizations, professional relationships and business practices which protect power through structures and policy. It can also be employed as a secondary analysis after the initial analysis is complete.

Discourse becomes a dominant method of analysis in Section 3, which includes systems analysis and emancipatory patient standpoint theory.

Framework analysis

The frameworks provide an early stage of analysis throughout regardless of methods. The engagement stages highlight the use of framework analysis in peer research.

• SET: Co-design team of patient researchers can enter preliminary data about the potential topics or problems for research. These can be entered by the team members as possible topics or social problems for study as they become identified. This framework matrix could replace the current use of posters of possible topics for research for a SET co-design team to prioritize. The matrix could also be used in rating each topic or problem during the SET focus group.
• COLLECT: During content or thematic analysis, the framework template could initially be used to record data at each iteration, and then it could be used to redefine cells according to the level of theme and subthemes. In action research, the template could be used to identify various ways that data inform or explain the social problem of the research.
• REFLECT: The co-design team of patient consultants could use a framework template to summarize categories related to the topic or to portray the explanation of the main concern based on the core category and properties based on sequence, actors, location, funding, etc.

It would be interesting to test the acceptability of framework analysis beyond the ability to organize and present data and findings. While it is effective in identifying similarities and differences in an easy to understand format for shared discussions, the eventual quality of the interpretation or theory is yet to be tested.

Framework analysis increases the scope of analysis. This framework link introduces framework in community participatory research. framework analysis process using in-vivo codes in a study of patient experience in emergency care. The article provides a step by step approach to framework analysis.

The following is a peer research example of a similar process of abstraction. Note that peer research is generally simplified to include fewer steps.

[Direct quote - transcribed with natural breaks with in-vivo incidents.]

As I noticed changes in the way people reacted to me,

it became important to be more like everyone else

Being normal is impossible

It always leaves me feeling alone

I always expect to fail.

Incident

I feel alone and expect to fail when I try to be normal

In-vivo category codes

I don’t belong

Trying to fit in

Expecting to fail

Interpretation

At this stage, interpretation options tend to blend. Interpretation is the act of explaining, reframing or otherwise understanding the meaning of a main concern, phenomenon or practice. It uncovers the underlying structures in what people do and say. The term ‘interpretation’ exists at the level of categories, pragmatic or explanatory theory, and conceptual theory. As such, it includes qualitative interpretation of themes and classical grounded theory that includes explanations of the concern and potential solutions. Because inductive analysis consists of constant comparison and memoing, interpretation occurs throughout the peer research process when grounded theory is used.

Interpretation is practiced by peer researchers and participant co-researchers at the end of each data event, by individual peer researchers, by the peer research team and by the REFLECT team that consists of peer researchers and consultants from SET or COLLECT phases.

Memoing is the act of recording what you are noticing, the patterns and questions that emerge. A memoing trail of meaning becomes the thread of interpretation as you develop a sensitivity to concepts that are emerging. In peer research, memoing is considered a personal and private chance to create your own conceptualizing style. This personal memoing occurs prior to sharing analysis with the peer research team so that each person is prepared and more confident in planning next steps.

While not an official characteristic of peer research, I have noticed that inductive research itself develops a finely tuned sense of emerging themes or pragmatic theory. While becoming immersed in the data and analysis, peer researchers become tuned to underlying concepts and potential directions for sampling and adapting methods. The following is an example of a team approach to promote individual conceptualizing.

A large team of student interns held a day-long focus group, and each person analyzed a portion of a portion of the flip charts. Each intern wrote memos about the categories that were emerging and what interested them most. While personal memoing is considered a personal and private process in grounded theory, it prepares each intern to take part in shared analysis.

During shared analysis, the first intern presented a category they had identified from a sample of incidents and why the category was of interest to them. The intern then facilitated a group discussion about the category and invited other team members to contribute data to that category. Each team member had a chance to present a new category or a change to an existing category. This version of shared analysis provides a learning process for personal conceptualizing and shared decision making. It is made possible as part of peer research because of the use of in-vivo and real life coding that focuses on real life happening instead of relying on emerging academic concepts.

Once there is an initial plan for how the categories work with the main concern or topic, a REFLECT focus group is convened. This consultation includes mainly patients and community members who were involved in the SET research. They work with the findings from a patient perspective. They challenge categories and their relationship to find a coherent presentation that explains, resolves or describes the findings. The REFLECT group then discusses the potential impact and suggestions for implementation or innovation. These lead to discussions about how to present the findings, potential audiences and opportunities to try out the findings. The session ends with an evaluation of the research process.

Because interpretation is not a separate process, we come back to the analysis frameworks that were used throughout to describe the process and expected outcomes.

Thematic interpretation

The final stages of thematic analysis is a process of consolidating main themes and the hierarchies of sub-themes. Quotes are generally incorporated into the structure to capture patient voices. This generally leads to discussion of each thematic hierarchy.

Grounded theory interpretation

Grounded theory as action based research arrives at the end stage as part of iterative cycles that support analysis and memoing of the emerging explanations of the main concern amd resolution of that concern. The focus on the main concern and individual memoing that supports shared analysis builds momentum toward a consolidated picture of what is happening to create and sustain the main concern. The essence is a simple and actionable pattern that leads to specific recommendations for action backed by evidence.

Narrative interpretation

Narrative interpretation provides a way of conceptualizing findings within a story framework. Because narrative supports all forms of data collection and analysis, it can augment any stage of the interpretation processes. One of the interpretation tools identified during narrative analysis of autobiographies by undergraduate and graduate students who used story templates throughout their class research is presented below.

Autobiographies were eventually analyzed using an abstracted script template that captures the context, plot and consequence of a category. The context is abstracted using the property of ‘when,’ which identifies the setting from the person’s perspective and as such it begins the template with the ‘I’ pronoun. The plot is reduced to the fundamental action that describes the property of ‘how.’ The consequence captures personal life story changes, beginning with the ‘and then’ property.

[Direct quote - transcribed with natural breaks.]

I noticed changes in the way people reacted to me

It became important to be more like everyone else

Being normal is impossible

Eventually it left me feeling alone

Always expecting to fail

Potential script or interpretation

When people noticed the change in my condition

I try to fit in

And when it doesn’t work, I feel more alone and a failure

The benefit of these simple scripts is that they are easily understood and tracked by researchers and participants during and after research. Scripts can be combined and structured into a final interpretive scheme. Action scripts also focus recommendations for prototype testing and implementation. This method of interpretation is expanded in Chapter 10: Standpoint theory.

Discourse interpretation

Discourse analysis results from the investigation of language to uncover sources and supports of entrenched power. It uncovers pragmatic and systemic theory about the influence of power at the level of relationships, organizations or society. This opens a power based debate about why actions and relationships occur the way they do. A power based interpretation can be applied at all stages of analysis and interpretation where you are searching for agency, both internal and external, to understand how actions happen and why people take up the roles they do. In Section 3, discourse analysis is used in Chapter 10 to locate the sources of power that patients experience within the health systems they use.

Framework interpretation

Like discourse analysis,framework analysis is a secondary tool that opens avenues for discussing interpretations.

Quality indicators of peer research partnership

Measuring Quality in Peer Research

Quality indicators can be considered from a number of perspectives. The peer research method adopted a classical grounded theory analysis to provide a consistent, focused and robust method of analysis and interpretation. The key to grounded theory quality lies in the process of iterative data collection and analysis through constant comparison, memoing, and planning next steps. This is the benefit of grounded theory standards that ensure that measuring and testing theory is built into the research fabric.

The quality indicators for grounded theory research include four practical criteria. A fifth category, engagement, is added for peer research.

• Fit: The final theory fits with the original main concern and the data.
• Work: The theory does what it is intended to do; in other words, it works to inform the underlying structure of what people do and say.
• Relevant: It is useful for those who share the same concern; it makes sense.
• Modifiability: The theory can be applied and modified for different populations and different concerns.
• Engagement: This category was added for peer and community research to identify how patients and community members were engaged in the research and how the results can be used in engaging other groups and communities.
• The following criteria were developed at the end of the Grey Matters project to formalize how peer research was different from qualitative research:
• Real life language: All communications, including proposals, interactions, meetings with stakeholders and media, research methods and protocols, reports and articles use language that is understood by all. Concepts may become abstracted, but retain real life experience examples.
• Representation: The various voices in your project are clearly recognized and documented. Representation is a negotiated process. The methods for achieving partnership at each stage of the research – from creating the research agenda to presenting findings – are negotiated through a process of mutual agreement (cf. Chapter 3)
• Relevance: The process and results should signal a change in the practices of research. Begin by reviewing the following principles of collaborative research with each person who joins your team. These set the expectations of how all researchers and participants will be included in the process:
  • Equal but different: The thoughts and beliefs of all participants about the shared questions and issues are equally valid. Everyone from the grant holders, project coordinators, peer researchers, co-research participants and volunteers need to accept that each person will have a say.
  • Trust: Trust is hard to earn and is quickly lost. Actively acknowledging the contributions of participants leads to greater understanding and an openness to hear and learn from the voice of others.
  • Shared power: Nobody decides for somebody else. Sharing power starts with the expectation to listen and the freedom to express opinion. Each person learns from others and grows in their own confidence and capacity. The team lead and committees need to ensure that there is a consensus process in place for meetings and a process to make decisions between meetings. This requires a strong team lead that summarizes information and data for discussion, sets meetings, writes minutes and emails, and maintains open logs of progress. If the participants are going to own the results, they must feel they own the process.
  • Shared work: To share expertise, there needs to be a willingness to use common language, and model and mentor unfamiliar activities. Learning to share requires time for reflection on the process and joint ownership of successes and failures. Working together includes the glamorous tasks of planning and committee work, but also the tasks of clearing up, making tea, and taking the heat for missing deadlines. It may be just as hard for an academic to learn to chat with a potential participant over tea as it is for a senior to analyze data. Neither task is exclusive in collaborative research.

Are we doing it right or is it any good

We end this long and detailed chapter with a comment made by JW from the Grey Matters project, who summarized the thoughts of her research team of seniors: “It may be easy to learn how to do the research but then, how do we know if we are doing it right or if it is any good? These words resonate with most research innovation”(Marlett, 2010, p25.)

JW has a good point - wanting to do research isn’t enough, it is necessary to know the standards used to judge good research, so that there is confidence in the quality of the work. The standards for judging quantitative or experimental research (experiments with numbers) are widely accepted. Reliability in quantitative research means that the findings can be replicated by others who use the same procedures.

The following are commonly accepted standards for qualitative research. The criteria of quality in grounded theory includes clear measures of clear links between the concern, data and findings (fit). Does the theory work for the reader, is it relevant or make sense to people with similar experience and is it flexible enough to be useful for similar concerns or problems.

Credibility

Are the results believable from the perspective of the participants in the research? Would a patient or a member of a marginalized group who was cruising the internet have faith in what you are presenting? This includes faith in the question, the methods, and the findings. This is where peer research has the edge over most academic researchers. If the research is designed and conducted by patients, the results should speak to patients.

When patient’s use research done by other patients they will likely be surprised that peer research exists but as they respond to the concern identified, the explanation of the concern and the suggested actions to make a difference in their language, they are likely to resonate with the process used and be intrigued by the results. Because peer research uses the pronoun we in articles, they are building a relationship not only with the patient participants but with other patients who are concerned about similar problems.

Transferability

When a researcher talks about findings or writes an article, they need to think carefully about how other people or programs might translate the findings to their situation. To accomplish transferability, the researcher starts by carefully describing the ‘who,’ ‘where,’ ‘how,’ ‘what,’ and ‘when’ of the research, so that the reader can understand the research and how it relates to their own situation.

It will take some time to establish a patient research voice in academic publications so it is important to foster other ways to write and speak about peer researchers in other venues that patients read. This initially might include health associations related to the research, seniors magazines such as Zoomer, publication hubs for peer research like the PRISM/ PaCER hub.

Dependability

This is a confirmation of how carefully the research was done, what problems arose, and how the changes made affected the study and the results. Dependable research is transparent, meaning that nothing is hidden. Sometimes, standardizing the process increases dependability, but can decrease credibility. As JW, one of our researchers, commented when administering their standardized questions: “We felt good that we had a standardized questionnaire and that we were doing the questionnaire the right way, but the answers were boring and left a lot of questions unanswered (Marlett, 2010, p86)”

Objectivity

Academics are most likely to use this objectivity standard against research done by patients and communities. They may feel that peer researchers are biased and tempted to distort the information to reflect what they want to find. Research is not about proving the researchers’ thoughts and knowledge, but about looking at every event or piece of information as if it were happening for the first time. Objectivity means that every observation is open to question. Every researcher, regardless of age, has to struggle to avoid having their biases affect their observations. Research can range from a very simple observation to a very complex investigation, but regardless of the size or complexity, all research is a process of discovery.

In this chapter, we have attempted to provide a broad overview of how health researchers and healthcare providers can understand and support peer research. The following quote is from two of the authors of Grey Matters in their field notes:

“It would have been so easy to take the data and to write it up as an academic, the data spoke to the theories that we were interested in. It was a hard decision. In the end, perhaps there is a place for both, research that speaks to theory and research that speaks to everyday life. The ideal would be to have both goals possible in the same method; at least it’s something to work toward”

Summary

This chapter explored the basics of peer research methods in a variety of health related research options to extend patient engagement. Those wishing to become peer researchers may also understand why peer research is different from other forms of qualitative research.

This chapter completes the second section, combining the findings of a number of research projects. As such, it provides the background for PaCER training for those health researchers wanting to include patients in their research plans and research teams thinking about hiring trained patients to augment existing or proposed grants. It is also provided for researchers who have either taken PaCER training or worked through the companion Grey Matters and this manuscript and are willing to experiment with training the patients and communities they work with and develop their own version of peer research.

Research students and researchers who identify with a patient or community population might use this chapter to hone their personal research skills. It is hoped that teams who are working with peer researchers may consider new ventures to create new models of peer research. This chapter is above all, intended to incite experimentation and sharing of engagement methods. It is not a manual but a set of ideas from 30 years of experimenting with engagement methods.

The next section uses the methods and theories of Section 2 to extend peer research to support social innovation and social enterprise to bring patients and communities into the transformation in health that is ‘just over the hill.’

Review questions

1. Have you used methods similar to these as part of your research? If so, how have peer research methods differed, if at all?
2. What methods seem to capture your ideas about peer and community research?
3. What obstacles do you see in adapting these peer methods to your patient engagement practice?
4. How might you incorporate peer research into your future plans?

Resources

The following process is one summary of a research method using the stages presented during this chapter. It captures a single iterative cycle of data collection, analysis, interpretation and planning the next cycle.

References

Davidson, B. (2017). Storytelling and evidence-based policy: Lessons from the grey literature. Palgrave Communications, 3(1). https://doi.org/10.1057/palcomms.2017.93

Holton, J. A., & Walsh, I. (2017). Classic grounded theory: Applications with qualitative and quantitative data. SAGE.

Involve. (2022, August 25). Co-production. https://involve.org.uk/resources/methods/co-production

Marlett, N. & Emes, C. (2010). Grey matters: A guide to collaborative research with seniors. University of Calgary Press.

McCarron, T. L., Clement, F., Rasiah, J., Moffat, K., Wasylak, T., & Santana, M. J. (2021). Co-designing strategies to support patient partners during a scoping review and reflections on the process: A commentary. Research Involvement and Engagement, 7(1). https://doi.org/10.1186/s40900-021-00272-3

McCarron, T.L., Noseworthy, T., Moffat, K., Wilkinson, G., Zelinsky, S., White, D., Hassay, D. Lorenzetti, D.L., Marlett, N.J. (2020). A co-designed framework to support and sustain patient and family engagement in health-care decision making. Health Expectations 23(4) 825-836. https://doi.org/10.1111/hex.13054

Verleye, K. (2015). The co-creation experience from the customer perspective: Its measurement and determinants. Journal of Service Management 26(2)321 - 342. https://biblio.ugent.be/publication/5724778/file/6888321