1.3 A Social Contract for Engaging in Health Research

Highlights

• Engaging patients in pillars of health research
• Types of qualitative health research
• Concerns about peer research
• Examples of innovative research teams
• Social contracting throughout the research cycle

Introduction

This chapter is written for health researchers and professionals interested in expanding their current patient engagement practices or exploring research innovation. It is also written for patient and community advisors who are positioned to promote and encourage patient engagement in research. Acts of Engagement are adapted from the familiar IAP2 levels of engagement and these are used to provide an onramp of opportunities for patient engagement throughout the research cycle. This is not a teaching platform or an in depth discussion of research methods, but an invitation to understand how to identify options that might work in your situation, one step at a time. Those who already have patients and community members involved in research should review this chapter together. It is a good introduction to training patients to become research partners or Patient and Community Engagement peer researchers.

The introduction begins with the current health research structures within four pillars of Canadian Health Research. Options within Qualitative research are then introduced.

Four pillars of Canadian health research and the discourse of communities associated with them

Having patients as researchers is not easy for those who have been used to more conventional research where the data is most objective when collected from naive subjects. However, when engagement is the goal, the method and the product of an emancipatory and innovative health science, we suggest that all research and methods that include patient experience can benefit from including a patient research voice as part of the team. Engagement is a familiar construct in patient centred care, patient advising in governance and patient partnership in healthcare. The following is a brief overview of the Canadian pillars of health research from an engagement perspective

Pillar 1: Biomedical Research

Biomedical research seeks to understand how the human body functions at the molecular, cellular, and organ system levels. Through biomedical research, we are able to develop new therapies and medical devices. The patient role in biomedical research has been limited to providing samples and basic data. There has also been a long history of patient and health associations that are active in fundraising and encouraging patient advisors on health teams. Debates about protection, ownership and privacy in citizen science crowdsourcing in clinical trials aligns with the growing power of patient controlled health records that can be shared as patients decide, with research projects, specialists in other locations.

Pillar 2: Clinical Research

Clinical research seeks to improve the diagnosis and treatment of disease and injury to improve our health and quality of life. Clinical research builds on the work of biomedical researchers. Clinical research provides scope for collaboration as clinical trials embrace the new scope and possibilities of citizen science and crowdsourcing. There is also the recognition that current Patient Oriented Research is limited and could benefit from qualitative research to include patient perspectives on outcomes and experience. Contributive justice in biomedical research (Timmerman) could lead the way to partnership with underserved populations to ensure data equity in clinical trials.

Pillar 3: Health Services Research

Health services research seeks to improve the efficiency and effectiveness of health professionals and the health care system, through changes to practice and policy. It focuses on the social factors, financing systems, organizational processes, technologies, and personal behaviours that affect our health. Patient engagement has a long history in quality improvement, co design, health technology assessment, health systems design and social innovation, governance. The advising roles are being extended to include partnerships and opportunities for peer support, community councils and peer research.

Pillar 4: Population Health Research

Population health research seeks to improve the overall health of different groups of Canadians by better understanding the ways in which social, cultural, environmental, occupational, and economic factors determine our health. The World Health Organization has been advocating that countries include citizens in

• Empowerment - where citizens and communities take control of their health through health promotion, prevention and partnerships,
• Engagement - through shared decision making and health care planning, which is a feature of many provincial health councils.
• Co production - where teams of citizens, professionals, researchers and administrators become the engines of innovation and social change. We see this in the Strategic Clinical Networks in a number of provinces.

Population health research has been the home of participatory medicine, community based participatory research, action research and action science. These developments have begun to open options for peer research and community led research.

Health Research Options

The following identifies the challenges and opportunities to expand the scope of health research. We consider both conventional (modern, quantitative or positivist) and post modern options within quantitative and qualitative research. We can begin with a very short overview of how the focus of research impacts the type of data collected and analyzed.

The type of data being collected within different research traditions also defines expectations and roles.

Quantitative Research

The basic distinction between quantitative and qualitative is that quantitative research uses numbers and qualitative research uses language. There are however many options that use language to create numbers. POR is an example that uses items of patient experience expressed in words to create scores. The scores are assumed to measure a defined characteristic. These quantifiable results link easily to other quantitative measures in health research at all the above levels. The researcher chooses the standardized questionnaire that applies to the patient experience that reflects the topic of research, and is able to both publish the patient experience results and inform other related research. The challenges relate to the relevance of both the items and the meaning of aggregated scores to the “class of patients’ studied or in general. POR adapts easily to crowdsourcing that is increasingly used to overcome difficulties with recruitment.

Behavioural research, a form of qualitative research emerging from psychology, is also quantitative and deductive, where the unit of data is the behaviour that can be observed. The person researched is defined by their actions, not by who they are. This basic framework is adapted to a wide range of research from institutional ethnographies to infant communication. Behavioural research dominated psychology during the 20th century and is still a foundation of behavioural management research.

Qualitative Research

Uses language to describe, analyze and explain experience, values, motivations and collective meaning. As such this ‘big tent’ generic research category, is adapted and used within most social sciences including sociology, Anthropology, Education, Social Work and Cultural studies. These disciplines used social constructivist exploration of self concept, roles, relationships, social organizations and movements. Data collection included open ended conversational interviewing from phenomenology, observations and critical ethnography. The data are words, images, sounds and artifacts embedded in language structures. Subjects were no longer recruited into standard experiments, their lives and experiences were the focus of study. Over time patients and community members were included in defining expertise and experience. The role of the researcher also changed dramatically. The researcher attempted to take up the identity of the persons being studied, to experience and more fully understand experience from the patient and community perspective. Some adopted a group identity to become participant observers or became embedded in data as conceptual interpreters of experience and language. Regardless of the discipline or methodologies, qualitative researchers are active agents in research

Action research is a variant of Qualitative Research that takes this engagement to the next step by challenging entrenched and systemic power imbalances. Some examples include Action Research, Participatory Action Research, Community based participatory research, Grounded theory and Emancipatory, or Critical research from feminist, indigenous, black and disability perspectives . The major shift here is the inclusion of participants as partners in research, building on the early feminist partnerships of women researchers, and women seeking to understand how their roles were constrained through patriarchal values. In peer research the role of researcher is assumed by the patient who is trained in patient research.

The following list of qualitative options that have been introduced in the past 50 years:

• Grounded Theory, developed by the sociologists Glazer and Strauss during the 1960s and 1970s
• Modes of social inquiry such as interviewing and content analysis (Gillham, 2000; King & Horrocks, 2010);
• Action research (Hart & Bond, 1999; Sixsmith & Daniels, 2011);
• Discourse and discourse analysis (Tonkiss, 2012; Potter & Wetherell, 1995);
• Narrative (Polkinghorne, 1988; Reissman, 2008);
• Biographical research methods (Roberts, 2002);
• Phenomenological methods (Giorgi,1995; Langdridge, 2007; Lawthom &Tindall, 2011; Smith et al., 2009);
• Focus groups (Carey, 1994; Vazquez-Lago et al., 2011);
• Visual research methods (Mitchell, 2011);
• Ethnographic methods (Boyles, 1994; Punch, 2011);
• Photo-biographic-elicitation methods (Rapport et al., 2008);

(PDF) Qualitative Research Methods in Psychology. Available from: https://www.researchgate.net/publication/236158419_Qualitative_Research_Methods_in_Psychology [accessed Dec 22 2020].

Most qualitative research relies on highly trained researchers who are embedded in the philosophy and paradigms of particular disciplines or versions of qualitative research. The science of engagement is also influenced by constructivist or Interpretive research that claims social values, meaning, structures and relationships are created and recreated, through social interaction within affiliate groups, culture and professional groups, programs and systems.

As the impact of social construction became more pronounced this landscape opened new ways for patients and communities to be engaged in qualitative research. This leads to the potential for further involvement in Action Research. The following are qualitative options that have informed peer research.

• Interpretive research: uncovers and explains how and why things happen the way they do. Grounded theory, Action research, Discourse analysis, standpoint research and ethnography all use specific methods to study and explain reality. Interpretive research employs iterative and inductive data collection and analysis cycles. Methods include traditional interviews, observations, documents and artifact analysis, systems analysis, case studies and narratives that can be adapted to maximize engagement. Interpretive research using peer research by trained patients, communities, and persons with disabilities often includes direct service staff that can provide parallel real life experience and the potential to combine staff suggestions for social change with those of persons with lived experience. This is reminiscent of narrative counselling where communities and professionals bear witness to each other’s experience and stories in order to come to a common understanding of opportunities for social change
• Pragmatic research: shifts the focus of social construction research through a lens of usefulness. It provides methods for solving problems and measuring change using the above methods but with a focus on expert lived experience. Pragmatism is about finding what works or could work, as such draws on co design and quality improvement experiences. We also see the use of design thinking and social innovation emerging from structured action science that brings the need to understand not only lived experience of patients and communities but the systems, programs, policies and relationships that structure those experiences. Without both of these perspectives there can be no shared vision for improvement. Not only is this useful in co design but also in implementation, because both key partners have been included separately and reached common strategies
• Critical theory: brings focus to the role of power relationships in socially constructed realities. It emanates from Critical or Marxist theory and brings a power lens to the research methods mentioned above. Emancipatory social science uses this critical or power lens such as discourse analysis, participatory and action science that focuses on the subjugation of groups by entrenched policies, systems and values. Many academic, culture or population based programs rely on peer researchers who embody the population under study: Disabled, indigenous, women, black, researchers. The current science is an early attempt to introduce methods and theory to create patient researchers who are specifically trained in peer research methods. This form of research is taken up in the next section with the introduction of a standpoint or emancipatory theory that provides options for personal change.

https://www.mcgill.ca/mqhrg/resources/what-difference-between-qualitative-and-quantitative-research

Academic Concerns About Peer Research

Social innovation in a powerful system such as Healthcare is bound to be seen as threatening. The size and complexity of the practice and politics of healthcare resists change. Innovation involves a new research option and challenges patient/professional relationships and roles. Research that claimed to represent patient experience from a patient perspective was met not only with skepticism, but reluctance to include ‘lesser’ methods in authorized research practices. In the past, most teams who were willing to consider patient research partnerships sought patients who also had experience in health research, or were health professionals who could be trusted to know the field and what was expected. This was effective and most became part of the team. However, it did not bring a new approach to research that represented the missing patient and community voices that were needed to address systemic discrimination in health research.

When the Strategic Clinical Networks were being launched, they wanted to introduce patient advisors with research knowledge. We recognized that training patients from marginalized groups to conduct research would not be acceptable to the network members, unless there was a deliberate attempt to respond to the concerns of professionals. We set out to create research approaches and training programs that could be recognized by health professionals. Within the first two years of the grant, patients had graduated from the program having designed and completed research projects that demonstrated a new research voice. With the assurance of academic oversight of ethics requirements and academic integrity, early resistance diminished. In health influential champions will always be needed to bridge this early development stage. Adopters of the concept of peer research as a partnered approach need to discuss how to champion the process and support early adopters.

New programs wanting to adopt peer research could use this book to help prepare their research colleagues to understand the potential for peer research. This new science of engagement was created to justify peer research as different from patient experience research done by professionals and academics. It was not until our incubation processes identified the value of invivo coding that we were able to create a parallel perspective. Academic researchers can benefit from patient perspectives of experience through everyday language. It is also useful to have peer research reanalyzed using more conceptual coding to more clearly understand the differences.

Another obstacle was the dependence on consistent and predictable methods in health research, compared to the need in peer research to be able to adapt methods to maximize engagement. Engagement as the focus of science is not a specific set of methods of data collection and analysis. The methods included here have been used in a variety of platforms, paradigms and traditions. They have also been adapted when needed to respond to specific conditions and cultural needs and have been adapted to condition and cultural needs and traditions.

There was also a concern about the implied need for emancipatory or transformational research within health care systems. Most health professionals feel that their practice is patient centred and informed by patients, thus the need for a new perspective of patient experience was not needed. However, research done by, with, and for patients created safe, flexible and inclusive spaces that made storytelling possible and collective patient research voices spoke of new perspectives and ideas for social change.

Some of the more subtle concerns included the nature of insider/outsider research. Many felt that researchers who were patients could not be objective, because they would lose their perspective as patients once trained as researchers. While both insider and outsider perspectives are reality, it is an asset when trained how to use both perspectives in research. Patients while learning to become peer researchers confront and deal with their patient and personal biases and perceptions that may interfere with open and shared research. The ability to be both an insider and outsider when needed requires that personal reflexivity and shared analysis be built into all peer research projects to ensure that peer research teams are ‘doing the personal work’ to keep insider and outsider roles separate

One of the benefits of having a flexible insider/outsider presence is to ensure the relevance of research to both academic audiences and field or population audiences. The relevance to the academic audience has been relatively easy to accomplish through the publication of peer reviewed articles done with academic sponsors. The equally important need for a collective patient research voice has been more difficult to achieve. The first step was to create a publication hub (PRISM link) for research reports and internship papers that were written by patients. This hub also includes direct links to open access peer reviewed articles done in collaboration with the peer researchers and the academic or professional sponsors.

1 From the IAP2 Spectrum of Engagement to acts of engaging

Engagement has been categorized through the levels proposed by the International Association of Public Participation (IAP2). The following table presents the most current and straightforward version related to health research from a researcher perspective as identified by the British Columbia Strategies for Patient Oriented Research (SPOR). It also includes researcher promises to patients.

Table 1: Example of International Association of Public Participation as adapted for Health Care by the BC SPOR Unit.

The next table resulted from a series of exercises with sponsors and contractors of peer research to create a set of actions that represent the above characteristics of patient engagement.

These Acts: TELL ASK INCLUDE and LEAD (TAIL) are used throughout the book to operationalize citizen and community engagement in research. The short definitions are included below. In the end, the categories were adapted to reflect a patient perspective and the ‘involve’ and ‘collaborate’ categories were condensed into one. The resulting patient categories enabled patients and researchers to negotiate how to engage.

Table 2 . The translation of IAP2 spectrum as the acts of engagement.

TELL: relates primarily to the INFORM category within the IAP2. In health research, ‘telling’ captures the science of Knowledge translation that applies to all stages throughout the research cycle. Telling is about effective communication, mostly from researchers to patients. This section is based on the principles of clear language, relevant information and transparency about why the information is needed, why participants will need this information and how the information will be used.

This act also called the peer researcher to pivot the conventional neutral and detached roles to a role of disclosure and inclusion. This begins with the challenge to tell what the research is about, who is involved, who is sponsoring and what will be done. Telling continues throughout research with a mandate to fully prepare participants in advance so they can be ready to contribute as a co researcher. In other words, we are shifting to a creative, collaborative process that begins with the peer researcher being a co researcher; sharing goals, methods, data collection, analysis, interpretation and implementation. We begin with stories introducing the co design of research that introduce the peer researchers and the role of patients in the research.

• A peer researcher who is a South Asian woman shares her personal story about advanced care directives when peer researchers visit South Asian families to set the tone for a family interview
• During narrative interviews peer researchers are trained to share their stories to support co researchers in telling their own stories
• At the end of each focus group, peer researchers share findings and evaluate the process and findings to encourage participant co researchers to share what they have learned about the findings and the process.

ASK: resonates with the IAP2 category of CONSULT. But in Acts of Engagement, the action of asking is applied throughout the research process. In health research, ‘Asking’ generally relates to the standardized collection of data about patient outcomes, experience, satisfaction, behavior, opinions or decisions. These data sets inform clinical trials, experiments and quality improvement. Asking, when used as part of the Acts of Engagement, encourages patients to ask what they can contribute to the research process, what is important to them, their suggestions to make the process more relevant, and meaningful. This act opens the other direction of engagement - from the participant co researcher to the peer researcher. We ask to be able to adapt. Adaptation is the engine of engagement, being ready to ask what the participant needs to know to take part, to prepare, to feel comfortable and safe during data collection, to share in analysis, to evaluate and share in presenting and implementing findings.

• Adaptation includes meeting by phone or online, having a friend attend interviews with a person who has trouble with language.
• Indigenous peer researchers from different communities create a ceremony to ground a focus group on cancer prevention that will honour participants.
• Peer researcher’s ask family members how to introduce their research findings about including families in ICU care.
• Crowdsourcing ideas about potential grant topics to be prioritized by a patient advisory group.

INCLUDE: This marks the coming together in co research. When TELL and ASK are working, the stage is set for inclusive research experiences that are indeed partnerships. This is where ‘peer to peer’ becomes a reality not only during data collection and analysis but in planning next steps - who to recruit, how to adapt methods to new populations, how to present findings to new groups. Examples might include

• the end of focus groups where findings are shared and suggestions made about next steps
• where co researchers might use their connections and knowledge to identify problem language, politics of inclusion, initial contacts for data collection.

LEAD: This act relates to the empowerment category in the IAP2 and is seen in peer research and peer support programs led by peers. The patient engagement researcher is considered competent to design and conduct engagement research about patient experience for quality control and research. These peer researchers use a variety of methods to ensure that patients are involved throughout the research process. Leadership is the end goal of peer research because it holds the promise of a new patient or community research voice that is evidence based and focused on patient issues.

The Players and the Process of Peer Research  

Table 2:  patient roles in conducting research.

The above roles in research can be manifested in a number of ways. A peer research team generally exists as part of an ongoing research agenda but can also be hired for a specific research project. A peer research team consists of a team lead that manages the project, recruiting trained research assistants, training patient partners or advisors for specific tasks. These tasks are identified in a research contract developed by the team lead and the PI of the research project. The contract is held and administered by the university or body acting for the university and a health grant, authority or agency. This is then administered through research, finance, legal and human resources. In the University of Calgary social enterprise the PaCER leads are considered vendors, responsible for the management and quality of the project. They also pay the research assistants and any expenses from the project funds. The PI and the peer research lead met regularly with the sponsoring or contract team.

For example the HIV/ AIDs research that is now linked across the country is not only a strong research foundation but an action research platform with an online training program devoted to emancipatory and social action and specific data collection options. This training is available to any groups looking to increase the knowledge of their advisors and peer researchers. (http://www.universitieswithoutwalls.ca/aboutuww/).

There are other versions being used and as peer research becomes more diversified, the structures will also need to adapt. For example, Health promotion university departments may set aside specific funds to promote peer research, funding bodies may include peer research as part of grant structures. There is a caution in the challenge to create peer research for the first time as paying patients as researchers is a new concept and it may take several versions to make it work.

As any team, the team lead co-ordinates the research tasks. Trained research assistants and the lead conduct interviews, share in focus groups, conduct shared analysis. The lead writes the final report in most cases and often includes team members and patients who have participated.

The PaCER program developed from a need to train patients across a broad scope of the strategic clinical networks. Our initial research began by training patients with experience living with Arthritis. Through a series of incubator cohorts the year long internship in designing and conducting research expanded to become an online university continuing education professional certificate in patient engagement. Patients, community members and university students are sponsored by SCNs, national research teams and community organizations, health systems and cultural groups. The year-long online certificate includes an introductory course, a practicum in co design and research methods, and an internship in peer research conducted by a group of patient student interns. The extensive research associated with this innovative peer research demonstrated that, as insiders, these trained peer and community researchers have become essential in gaining access to new sources of participants and in adapting existing methods to cultural and condition specific needs. The following are some examples of peer led data collection. Co researchers or participants share experiences within their limits of trust and safety, governed by the balance between the benefits and the inherent risks.

• A peer research team was contracted by the Surgery Strategic Clinical Networks to assess patient reactions to the safe surgery checklist. There was a feeling that patients were uneasy about the practice. The decision to not include them in the rollout was controversial and they asked that we not mention the checklist. Patients from most surgery units in the province were interviewed by phone by patients and indeed all but one felt uneasy, that it wasn’t what they expected, and most importantly, they felt that the staff were not prepared. During the REFLECT focus group we let patients know about the checklist and most were very upset and they developed a comprehensive list of recommendations to inform patients and prepare them for the checklist. During the Surgery SCN meeting the first presentation was about the rollout. The staff rollout research identified that patients needed to be more protected from the process because they showed signs of anxiety. When the peer researchers presented their findings and recommendations, you could hear a pin drop. All recommendations were adopted and patients became part of future changes.
• For example the HIV/ AIDs research that is now linked across the country is not only a strong research foundation but an action research platform with an online training program devoted to emancipatory and social action, with specific data collection options. This training is available to any groups looking to increase the knowledge of their advisors and peer researchers. (http://www.universitieswithoutwalls.ca/aboutuww/).
• A Calgary based PaCER arthritis team has had a long term relationship with a PaCER research team that works with the PI across numerous research grants and projects.Many of these have been built on earlier successes with peer research that included various types of arthritis, surgery policy development, assistive devices, community online resources for teachers, and indigenous support. This has been a model for other research projects. This team has been involved in payment schemes within university structures, the peer team recruited patients from other provinces and jurisdictions to match grant teams, produced reports and publications. This is a model of what can happen when national teams and committed researchers train and hire peer researchers. This same researcher has now been instrumental in training new peer research teams with the national IBD team and works with a PaCER graduate to co lead the patient engagement initiative.
• Wellesley Institute in Toronto is the Canadian leader in urban public health research and has conducted the seminal research in peer research as part of Community Based Participatory Research (CBPR) investigating how Social Determinants of Health interact with systemic discrimination. Their research demonstrates how community engagement not only builds community capacity but political action and local social change.
• The Service User Research Enterprise (SURE) undertakes research that examines mental health services from the perspectives of those that use them, explores empirically and conceptually the impact of service user involvement in research (in terms of both process and outcomes), and critically interrogates how service users have changed knowledge production globally. Accessed 2020 Service User Research enterprise (kcl.ac.uk)
• Research leads in Intensive Care Units, Acute stroke units and Acute Cardiac units sponsored research in these high profile units. The intensive care unit had a relationship over several projects and the peer researcher’s were included in writing grants. The peer team took the lead in developing training and orientation materials for how ICU’ could work more effectively with family members and changes were made to the transition processes. This relationship over 6 years produced publications and grants with other ICU teams.
• Canadian HIV Women’s sexual and reproductive health study (CHIWOS) Participant Research Associates (PRAs) has established a strong peer research team and online training. The following is a quote from a recent web report of their work.
• ‘PRAs continue to lead transformational research and its translation dedicated to improving the health and well-being of women living with HIV in Canada. By documenting the resilience of women in their communities, PRAs are giving women living with HIV a platform to voice their opinions, priorities, and experiences. For some women living with HIV, talking with a CHIWOS PRA may be the first time that they’ve shared their HIV story. For others, it is an opportunity to connect with another woman living with HIV, and a first step toward joining a vibrant community of women living with HIV and fighting back against the shadows of isolation, stigma, and discrimination. They are collectively building and contributing to a stronger community to fight for equity’ Accessed 2020 chiwos.ca hiring, training and supporting research presentation
• The Cancer Prevention Legacy Fund of Alberta and the Population, Prevention and Indigenous Strategic Clinical Network, contracted PaCER to train indigneous students to conduct cancer prevention research within indigenous communities. This large project enabled PaCER to hire its first infrastructure supports and put the PaCER curriculum online to be delivered throughout the province and country. Teams completed the training developing research related to cancer prevention related to family supports, stories about cancer , and cancer screening.

2. A Social Contract in Peer Research

This section focuses on peer research from a researcher perspective. It employs the social contract negotiation tool above, used in chapter two to frame the relationships between researchers and patients and communities. There are also checklists of activities that have been found to promote positive and productive engagement.

Table 3: a generic negotiation tool for identifying roles and expectations in research.

Each section related to the following research cycle begins with a short introduction to the roles and expectations, followed by a series of suggestions to maximize engagement.

This is not intended as a manuscript to be read from beginning to end. Access it when looking for specific suggestions about engaging. There are many examples drawn from peer research and it is hoped that in the review process others will suggest examples as well.

Figure 1. Simplified Research Cycle for research, Quality Improvement and Planning.

a) Co Design for Grant writing and approval

Most projects don’t include patients until ‘all is ready’ and the focus of the research, the methods and the analysis is clearly in place. Originally, the SET focus group took place after ethics or funding because of ethics expectations. Most of these SET or co design focus groups produced powerful stories that supported a patient perspective on research priorities that often differed from what the research team expected to be priorities of patients and communities. Luckily most research teams were intrigued and ethical protocol changes were processed. With the Canada’s Ethic’s Tri Council shift to consultation prior to submission, co design allowed concerns, issues or new ideas to be incorporated into ethics proposals and grants. This affirmed that patients had a role, that their concerns and priorities mattered.

The table below identifies a basic overview of roles and expectations of patient and community consultants when applying for grants. This occurs within a co design stage of consultation prior to writing the grant and ethics proposals. The roles for patients and communities at this stage have been considered a time limited process, but research indicates that inclusion of advisors and peer researchers at the beginning of a project and continuing until completion is much more effective.

Table 4: Suggestions for negotiating roles and expectations in grant writing.

Grant writing combines a number of distinct steps:

• Letter of Intent (LOI)
• Agenda setting
• Grant development and supporting letters
• Research plan

Ethics approval

If engagement doesn’t start at the very beginning it remains a token. The patient consultant is left trying to fit into what has already been decided. Patient input is critical when deciding the setting and the rational (the ‘why now’ of the study). Even basic research is being encouraged to include end users in this initial work.

In a study of acute and life threatening situations, the team received a grant to identify the types of decisions family members wanted to be part of and how to engage them. At this point the team approached patient researchers who discovered that families did not want to be part of life saving decisions, but wanted more input as the patient became stable.

The next example describes a large consultation to develop a research grant as part of Grey Matters (2010). It included working with small groups of seniors to set the general purpose and topic. We then recruited retired university researchers to help with a large community consultation to clarify the topic and to create a method for the grant.

The grant included the concept of resilience as identified by seniors, they were instrumental in writing the LOI and research grant. Retired researchers from the university joined the group once the LOI was approved to help plan the research grant consultation with seniors. The advertising for these events included news coverage, senior’s magazines and newsletters, emails to seniors groups and the leaders of senior’s activities in the city and rural areas. The most important message was that seniors were providing a research day, so that seniors could take part in learning how to conduct resilience research. The research plan was completed and working groups were established at the end of the day, with the retired researchers who had acted as facilitators taking up mentor roles in the groups that were established.

PaCER graduates are often included in the early stages of grant development to provide basic input from other peer studies. Some graduates became research colleagues, available to the team as a natural part of the ongoing quest for grants. In another model, a university research support service in the USA provided a service to researchers by facilitating a consultation with patients who have been trained in research grants (reference transdisciplinary science conference, 2018).

Many early stage research teams are nervous about including patients at this stage because they feel they need to be ready before patients are included. The example below suggests why it is important to include patient consultation early.

• The PaCER team presented findings on models of effective arthritis care at a large research planning meeting. As a member of the audience I was overwhelmed by the respect for the patient findings. While the findings were diametrically opposed to the anticipated direction for the day- a provincial assessment team- the members ended up supporting conservative treatment to avoid surgery
• A national team planning session on transitions in care included a pacer team that had conducted an internship project on transitions from ICU to a step down ward. There were many patients involved in the planning session and each working group were able to use the presentation as a reference for the grant preparation
• In the most recent example, The PTS team of the CIHRNMHA Institute of Neurosciences, Mental Health and Addiction introduced a new initiative and decided to make this a patient (persons with lived experience) led planning conference on the PTS Knowledge Gaps Concensus. The patients planned the conference in all aspects, they met prior to the larger meeting to get to know each other and their shared interests and skills, they presented at the beginning of each session, discussed the topic with scientists and fielded questions. The energy and commitment in the room shifted from uneasiness to energy with a new openness to discussing difficult issues related to evidence based treatment with non-traditional populations

When it comes to grant writing and securing support letters, patients and advisors should be taught about the structure and process of the grant ahead of time with examples of previous grants. If the team has a consistent patient advisor, partner or peer researcher, ensure that they meet with the new patients and debrief after each writing session. The major problem at this stage is that the discussions can be heated and theoretical, which make it important to invest in supporting new patients

There has been a great deal of interest in priority setting processes which bring together patients and families, clinicians and researchers. These are popular as a way of forming a community surrounding the condition and potential grant writers. These provide a list of priorities for research. The following quote from a participant in one such large endeavour speaks to the danger of the priorities being left on the shelf.

• “We spent almost a year working really hard to come up with the 5 priorities for grants and I checked regularly to see what was being used and now, after 18 months I have seen nothing used or even mentioned. They could just have asked for input”

Patients are often expected to submit letters of support and a well crafted letter can spell the difference between an attempt and success. The support letters can be the responsibility of an experienced patient advisor or researcher who can either write letters or support other patients in writing the support letters, examples below.

• I was recruited early in grant development and helped to consult with patients living with experiences related to the grant. I was impressed by the willingness of the team to listen to patient ideas. Several of our ideas were incorporated into the grant and we were able to help with a recruitment strategy.
• The common concern for most patients and their families is the constant worry about losing access to needed follow up tests after treatment. The development of patient or family monitoring tools that can be shared with the specialists through telemedicine will make a big difference in being able to manage stress or fear of relapse.

An increasingly popular process is to invite research teams to present their proposal to the funding committee. Teams often request to have a patient attend. This is difficult when only 2 team members are funded. We have tried to have patients attend by teleconference but this is difficult to coordinate. Granting bodies are increasingly involving patients on the funding decision making committees and this means that more than a check mark in the patient engagement box will be needed. Innovative ways of including patients in research is becoming a decision criteria for grant approval.

Once the grant is approved, patients become part of the implementation plan. At this stage it is helpful to consult a trained peer researcher if you have not included them in the grant writing process. If you do have a consistent advisor, partners or peer researcher, they should be part of the research implementation team, attending all meetings to ensure that everyone is on the same page. While PACERs are trained in writing ethics proposals, it is more common for the project leader to write the proposal with an insert related to the patient engagement component of the grant. The ethics approval and the implementation plan should be shared with all patient team members.

In summary, the following guide is provided to help ensure that patients are engaged at all levels. Once the grant is approved it can be used as a quick reference for engagement. It is included as a checklist to guide discussion and can be used in writing final reports about experience engaging patients. Note that the role for patients is filled in for this example to help teams fill in the remaining guides in this chapter.

Table : 5 Suggested Acts of engagement for grant writing and early project planning.

b) Recruiting and preparing patients and communities

Much of the recruitment should have been investigated in the co-design of the grant. The reality is that the era of the poster is long gone with twitter, facebook, blogs, youtube and eblasts used extensively in citizen science and health research. The social media script will still need approval. Ethics committees may be uncomfortable with social media especially when health associations and clinics have their own social media. Recruiting through third party health professionals generally requires an additional layer of approval .

The risks may be reduced when patient advisors, partners or peer researchers are involved or in charge of recruitment. The following as some examples of recruitment using peer researchers:

• When usual methods of recruitment didn’t work to find people who had undiagnosed knee pain, the pacer researcher was able to put a short article about the problems she had with knee pain and why she thought it was important to hear from others, in a community newsletter. The response was overwhelming.
• A student wanting to connect with families with an autistic child stalled for over 6 months when recruiting through posters and teachers failed. One blog post from a parent garnered a large group of families, and the student was able to use the blog posts to announce meetings and share results of her study.
• Citizen Science provides the chance to work with scientists and to contribute to health research. The principles of Citizen science are available online to promote the reasons why citizens are respected and necessary in solving current problems. Crowdsourcing is ideal when large groups are needed, and other social media provide more contact with citizens.

Recruitment of participants for research projects has proven to be costly and difficult, it is a red flag in ethics. It is important to include a number of options for recruitment, and to ensure that you have patients involved in all recruitment plans. Peer research has uncovered a very different concern - patients often want to be recognized for their contribution. The need to protect personal identity must be balanced by the need to acknowledge the contributions of co research participants. This debate is clearly acknowledged within Citizen Science principles that require the contribution of the citizen scientist to be recognized. As more co research is done in medicine this debate should go beyond the needs for protection to enable recognition of contributions of participants.

Table 6: Planning and Evaluating Engagement in Recruitment.

c) Conducting peer research by, with, and for patients

As a social contract, data collection, data management, analysis and interpretation are included because of the iterative cycles that require that they occur simultaneously. During this step in research, the role of the researcher refers to the peer research lead, and the patient role refers to the participant in the research. The first step in conducting research is to work out a script to tell participants about the research and their role in the process. The participant often becomes a co research participant when they become part of the analysis and interpretation of the data that they provide.

It is also possible to train advisors and partners to become part of the research team when they are trained to collect and analyze data. This reflects models in community based participatory research, where advisors and research partners are trained as data collectors and may also be involved in data management and analysis.

Table 7 social contract for conducting research: data collection, management, analysis and interpretation.

The above figure of the social contract summarizes the expectations and outcomes of conducting peer research. The role of the participant or co research participant captures the scope of engagement that ranging from contributing personal experience and expertise to finding new understanding of personal experience and expertise and explanations of social concerns or questions that lead to suggestions for change and social innovation.

Table 8: Planning and Evaluating Engagement in Conducting Research.

The telling aspect of conducting research is controversial but essential because of the need to prepare the participants in advance so that they understand their role and the importance of their experience. The telling process enables you to discuss support that the potential participant might want to include. While it is fine to include a friend if needed, including family members who have a distinct and important view of research may prove difficult.

In a focus group about in-home care with chronic illness a daughter asked to be included in the group. This produced awkward moments when she wanted to share embarrassing information that led the parent to withdraw and the other participants were left managing her role.

A family member who wanted to be included in a study of couples and how they dealt with a difficult decision about children was asked to leave when she sided with her daughter.

A friend from a peer support group was able to help translate what the person was saying in a manner that they had worked out through their friendship.

Regardless of the way data is collected; in person, on line, with individuals, groups and communities, the privacy of the information and the data itself needs to be subject to rigorous management techniques and within strict ethical standards. This training needs to be continually revisited as new techniques are introduced. No matter how informal the data collection method, the participant needs to know that their information will not be shared outside the boundaries agreed to and that they should not disclose or share the data they were part of.

The use of iterative cycles that combine data collection, management, analysis and interpretation enables data collection to be seen as one integrated process, instead of four separate processes. Each step or cycle can be communicated with the sponsor or contractor.

d) Disseminate findings

The final sections are covered in more detail. In most studies, the process of research ends when the results are confirmed and the findings are prepared for knowledge translation or uptake. As such it includes translating research for practitioners, patients and the public to influence behaviour and attitudes of the population studied. CIHR sees a knowledge user as an individual who is able to use research results to make informed decisions about health policies, programs and/or practices. This could include patients and family members, health providers and policy makers.

CIHR has identified two broad approaches to Knowledge Translation (KT):

• Integrated KT (iKT) Potential knowledge users are engaged throughout the research process. This approach should produce research findings that are more likely to be directly relevant and used by knowledge users
• End-of-grant KT is when the researcher develops and implements a plan for making potential knowledge-user audiences aware of the knowledge that is gained during a project

Both forms can involve intensive dissemination activities that tailor the message and medium to a specific audience, and even further along the spectrum, can involve moving research into practice.

KT research is a very influential area of study that includes health literacy, integrated KT (developmental), communication strategy, motivational research, outcomes and implementation science. This area of research is often funded separately to ensure that results are shared. It is no longer the last task of a research project, which had been limited to writing an article for publication.

Table 10 Suggested roles and expectations in dissemination of findings.

In this area there are many guides related to the level of language, complexity and use of white space. The more difficult work relates to making sure that the information is relevant to the audience being considered. It is easy to meet all the standards and not connect with the audience. It is important for researchers to include patients and communities who have been included in the study to frame the findings for patients, the public and communities. This does not mean, preparing a presentation and taking it to a group for approval but working through the findings step by step.

Patients and Communities now have roles as collaborators and contributors in KT. The following list of potential KT that should include patients indicate the range of activities involved: Professional and research publication, Social Media blogs and Facebook pages from Research Centre's, health providers, governments, Mass media, Website, Press releases, Mail outs, Fact sheets, Hotline, Displays, Infographics, Storyboards, Presentations (Melissa Protesto and Marlyn Gill, 2014).

In inductive research the process is more complex. The information for KTranslation often includes continual modification based on engaging stakeholders in writing and planning the implications for implementation. At this stage peer researchers become key, providing access to patients, families and groups who are part of the KT target.

• In a study of family involvement in the ICU, the patient researchers, who had experience in ICU were instrumental in the following KT activities: taking the research finding to groups of families in ICU to discuss what was needed to change practice: they formed a provincial committee to create a manual about family engagement in ICU; they took the manual to ICU units for use.
• In the Wellspring study, the initial findings were revised through the following stages: members were invited to a focus group to discuss the findings and they added to the working theory; the board received a draft copy and discussed the findings; a group of Oncologists reviewed the findings and at this stage, the team decided to revisit the findings from a different angle which produced a theory that was substantial and useful within Wellspring (PRISM, Wellspring).

Knowledge translation as dissemination or knowledge sharing from a patient engagement perspective is a new feature in KT. Peer researchers and patients are involved in deciding what is important to share with the general public, patients and health care providers and the messaging of their voice.

This is where the most significant obstacles have been apparent. While most research relies on publication in peer reviewed journals and presentations at academic conferences, these must adhere to professional journal and presentation formats. Where patients are part of a team research project, they contribute a portion to the article and it is published within the appropriate academic journal. This is very important as a way to let the research community in that area of specialization know that patients can be involved and contribute to academically sound research. However, this means that the impact is also within an academic silo unless there is a key word in the search to indicate that the article included patient engagement as part of the study.

There are many new journals related to engaging patients in research, but again, these tend to use the expected format for producing articles. PaCER has made significant progress in using the third person plural ‘we’ to indicate the work was done in collaboration with patients.

There remains a large gap in KT of patient led research designed for the general public, patients, families and front line health providers. One of our first goals was to produce an authentic collective patient research voice in health science but the struggle continues to find a way to share and activate the implications of this new research voice.

In a first attempt to establish an open access voice with full key word search, the University of Calgary PRISM repository provides curation and dissemination of research, thesis, reports and presentations that are part of the open access search function that also includes journals and books. We have been able to provide links to published works, copies of internship reports, research contract reports and works in progress. It is our intent to open this to Canadian research teams, graduate student projects and research conducted by health associations and systems that engage patients in quality improvement and new program development. It is our intent to support patients to submit their projects and to evaluate submissions for yearly awards for innovation in the science of patient engagement.

• One of the pacer graduates has been reading the articles and reports and tweeting out summaries and links to the project and encouraging online discussion of feedback through tweets.
• A new faculty member looked up student reports in her area of research to give her a basic foundation and connect with the students who had done the work.
• PRISM has also been used as a source of grey literature in scoping reviews.
• News releases of studies done by patients have been included in Health organizations and academic departments.

This remains a work in progress, a repository is not the end result but an incubator of research ideas. PRISM will work to support publications derived from research reports and provide links to publications so that there is a comprehensive and curated resource of ideas to promote patient engagement in research.

Table 11: Partnership in Dissemination.

e) Implement and Innovate

Implementation is the new frontier and much is to be learned from Citizen Science, Ashoka change making universities, Action based Grounded theory, New social movements and advocacy groups. This is the stage that provided the motivation to begin the study of co research. It is here that implementation divides into two sections.

The first is to improve the quality of existing services and programs. This has been the focus of the majority of PaCER research because the work is sponsored by existing components of the healthcare system. This sponsored research has developed important social impact practice and policies. A social impact study is needed to follow up the studies completed and analyze new ways of tracking impact. The following table is a summary of the social impact to date.

The second implementation option is the bridge to social innovation and design thinking that is the focus of SECTION 3: making a difference. It moves beyond publication and dissemination to consider how the knowledge gained informs the social organization underlying the description and patterns in the finding. While Section three begins with the intent to make a difference, qualitative research often uncovers actionable information.

Table 12: Roles and expectations in implementation.

This is the reason that patients become engaged in research. This is why CBPR, PAR and PaCER, along with Grounded theory are gaining popularity and credibility in health research. People are willing to commit to research that makes a difference. The 3rd Section of this book is devoted to this type of action based research. All of the above methods focus on understanding or explaining social problems, issues or concerns of PWLE and communities. They do this to make a difference in resolving the concerns or finding ways around the conditions that caused the concerns in the first place. Therefore, we and those who employ this type of problem solving research expect to see an impact.

In the early stages of PaCER, the research was done in conjunction with the concerns raised by the SCNs. This partnership ensured that the research was needed and would be listened to and acted upon.

The more difficult question relates to how research done by patients continues to make a difference. As long as patients are sponsored to become trained, the implementation link is established, making the implementation possible. But what of research that is contracted by other bodies that don’t have close linkages to health care reform? It is hoped that when this type of research becomes available in other provinces and countries that the bodies associated with health care transformation will learn from the successes of the SCNs and research teams to embed patient researchers in their networks.

This raises the issues of payment. While PaCER and other patient researchers are paid to conduct research they are not paid to be part of the dissemination and implementation teams. To date this work has been done as a contribution to the contract or the sponsor. In the future, ways to pay for this important patient support of implementation need to be found. Those who know best how to work with patients and communities in implementing findings, can motivate stakeholders to consider the changes proposed.

In the advanced care study done with the South Asian communities in Calgary, implementation strategies were developed by community members, faith based leaders and community leaders along with the research sponsors. These people came to learn about the peer research that had been done in their community by PaCER researchers from that community. There was lively debate about how to implement the suggestions in implementing advanced care planning. These suggestions covered many aspects not expected.

As we end this chapter on a sponsor’s guide to understanding peer research, we are left with the question:

Summary: How does Patient Engagement Research differ from more traditional methods?

The simple answer is that patients are fully engaged in choosing research questions important to patients, their families and communities. Patient Engagement, in general, refers to helping individuals and groups to appreciate and manage their changing health circumstances with an objective of improving personal and social health in an ethically defensible way (adapted from Macadam et al, 2004). In order for this to occur, it is essential that patients and communities see themselves as capable of taking more responsibility for their health and health care, instead of relying on current medical systems that encourage patients to bring their health concerns to professionals for diagnosis and treatment. The anticipated sea of change in health care can’t occur without creating a patient research voice that demonstrates capacity in identifying problems, making decisions, following and adapting personal health care and co-ordinating chronic and complex conditions. Patients, as part of social media and advances in personal monitoring are moving in this direction. Now what is needed is a way to increase the patient research voice in health research, to prepare professionals for this emerging paradigm shift and creare examples of patient professional partnerships in moving forward.

They are included in making decisions about how to collect and analyze information and making decisions on how to communicate findings to other patients, professionals and the public. Patient Engagement Research (where ‘patient’ includes the patient, their family and community) introduces an important variant on patient engagement and research relationships. It introduces the potential for co creation of knowledge wherein all parties share, learn and benefit from the research process. Participants are equal partners, not anonymous or vulnerable sources of data. Patient Researchers come from the culture and experience of health seeking, and health care and thereby share understanding with patients. Engagement research, as a new concept with new relationships offers opportunities to revisit more traditional ethics practices.

You might consider an example of a research study you were part of or had read about to try out one of the contracts related to a stage of research that involved or could have engaged patients more effectively. Consider the steps in engaging and evaluate the engagement that was achieved. How could the engagement have been more effective.