3.9 Patient perspectives of health systems

You cannot understand a system until you try to change it (Lewin, 1951).

Highlights

• Systems change
• The role of peer researchers in systems change
• A patient perspective of health systems that opens discussion of the study of social impact on roles, relationships, identity and agency in order to inform systems change
• Analyzing patient derived systems using narrative and discourse analysis

Introduction

I have been intrigued by the influence systems have in our daily lives. This interest began in the 1960’s, first on a closed ward for women with complex behaviors, and then as the director of a vocational training program for patients hoping to find employment (cf. chapter 1, psychiatric hospital link). The power of changing routines that impact the nature of experience couldn’t be denied as women behaved as expected to gain access to their meals and treats. These changes also lost power when the token economy system ceased. In contrast, the vocational training program expanded to include ward based pre vocational programs, but this real life work system threatened the authority of medical staff who assumed control to ensure continuity of medical expectations.

When I was hired to develop the the community rehabilitation and disability program of studies and later hired as a faculty member, I turned to social construction as a way to study and influence the power of systems on individuals, emerging community programs and access to health and social care (Marlett, N. republished 2021, in resource section of this chapter. My intrigue with systems motivated my research in education, healthcare and long term care, welfare, penal, guardianship and social service systems. All shared hierarchical structures of staffing and decision making, professionalization, low paid front line staff, and firm criteria related to client expectations and access to resources. In all, access depended upon adherence to expectations.

This chapter proposes a different look at systems from a client /patient perspective. It combines subsystems and includes systems that exist outside of the formal health systems. The goal is to provide a template that can be used by patients and shared with service providers and researchers to understand systems as constellations of services and supports from a patient perspective.

For those interested in a current perspective of health care, Susan Harpers June, 2021 report on JEDI as part of innovative health care, provides some background on JEDI in health care.. This easy to read commentary summarizes how JEDI principles help us look beyond what we hope will be a JEDI experience for those coming to us for service.

Evolution of Healthcare Systems

In order to understand current healthcare and the potential futures of health systems, let's look at how health systems became so large and entrenched supported by health research. After the Second World War, societies around the world struggled to reestablish social order and looked to the dominant industrial and military systems as models. Healthcare grew through industrial models, adopting reliance on evidence, influenced by Japan’s industrial model that was based on extreme evidence based statistics. This evidence foundation became known as continuous quality improvement (CQI) or total quality management (TQM). These provided the scientific, statistical foundations, clear authority hierarchies and evidence based decisions that supported standardized care protocols.

As industrial age medicine and medical science merged to create strong science based health systems, the resulting model justified government funding and control, along with the development of health professions. Professions, supported by science and secure funding, produced medical evidence based definitions of service and standardized interactions between citizens and professionals. In this process, deviance became formalized as a criteria of eligibility, along with ‘due process’ to control deviance.

By the second half of the century, citizens and new social movements reacted against the impact of large standardized health systems. Citizens navigated increasingly restrictive systems, lost identity, control, and independence. Professionals experienced a loss of autonomy in their practice, depersonalization, and loss of effectiveness as protocols were adapted to be done by less expensive and less qualified staff. Governments, who saw costs and expectations rise, then sought to reduce costs by privatization, downloading care to families and less expensive care providers, while tightening eligibility criteria.

During this time design thinking, social enterprise and innovation and citizen science responded to advances in information technology and computing, artificial intelligence and machine learning in response to a fourth industrial revolution. This fourth industrial revolution creates new tools to respond to profound societal changes within our entrenched health systems. If we are to make a difference to existing healthcare and research systems, we need partnerships with patients and communities, new action research models, and flexible and nimble change strategies. Regardless, the future seems poised to become more democratized with complementary, traditional and community-based health, with services, both within and outside of the existing healthcare systems.

Figure 9.1 attempts to depict the nature of the healthcare system transformation, below.

Information age or digital healthcare provided the vision for the beginning of the PaCER program. Patients were eager to use their new found information to improve their health and the healthcare system and were early adopters of digital options that increase their capacity to manage their healthcare and improve their health. Digital wellness, as a new patient competence, includes our ability to prevent or lessen the burden of many chronic and stress related conditions.

It is here that we return to the growing wicked problems in health care and research that include large issues like the natural aging of systems and healthcare stakeholders that reify complexity, competition and bureaucratic barriers to unified action. Wicked solutions, on the other hand, are localized and focus on specific concerns that reduce complexity. In doing so they tackle problems of healthcare at local and specific levels.

Luckily, health research already operates at the level of localized health conditions and services. Research focuses on age, pathways and types of service and are the ideal ‘focused communities’ that include people with shared experience and knowledge. At this level it is possible to employ JEDI principles along with indigenous Ownership, Control, Access and Possession (OCAP). Increasingly research grants include more support for diversity and inclusion of experience to support goals of open innovation in science (OIS), Responsible Research and Innovation (RRI ) goals to make research more relevant to communities, creative and nimble.

PaCER training had the advantage of working with local and targeted health research grants, sponsored by research teams interested in patient perspectives on clearly defined conderns. For example one PaCER class include families with experience with Intensive care, another with recent immigrant women with early stage cancer, and another with patients with chronic kidney disease.Students shared experiences related to the topic of their research with each other, learning about diversity and inclusion and common challenges in access to care that is equitable and recognizes diversity to ensure inclusion for all.

In the future, systems will need to become more nimble and innovative, finding ways to test new ideas using low risk testing systems such as design thinking. Democratizing research is best done by including communities, patients and citizens as partners from co design to health implementation that includes new technologies, online options, partnerships with patients and community social enterprise.

The following are examples of large health research movements that have made a commitment to democratize health. These international movements compete with many other priorities but there is a growing commitment to make research and innovation responsible to society, community and those served by research.

Health related citizen groups such as Imagine Citizens are involved in collective citizen research. The largest collective patient voice is the International Alliance of National Patient Involvement in Research, which includes partners such as INVOLVE UK, PCORI USA, SPOR Canada and Consumers Health Forum Australia, support recruitment into research studies and increasingly support patient, clinician and patient researcher collaborations . Independent peer led research is gaining a foothold in establishing a patient research voice outside of traditional health research streams.

Gender, race, culture and age-based movements rely on shared wisdom and collective action to change systemic discrimination in practices and policies. Women’s, Indigenous, disability, race and aging studies academic programs have been able to create emancipatory, research voices based in critical theory foundation that supports the need for change. Design thinking, changemaking and social enterprise provide a different perspective, in that the engagement for change begins when PWLE come together with innovators to share experience, ideas and potential for change. All hope for change although the routes and tools are significantly different.

There are also apps such as Zamplo, conceived by the husband of a cancer patient. Patients enter and curate their own health records and make decisions about how to use and share their health data. Zamplo members are able to use their data for research projects, and a growing number of research initiatives also use Zamplo as part of their research recruitment and management. Luna a genetic alliance created by family members to create partnerships between families and scientists, is an example of a not-for-profit international movement and network created to ensure that patients own and curate their data to share as they choose with scientists and policymakers. It is making inroads in the sharing of data, data privacy and patient driven projects internationally, and showing the possibilities of patient driven innovation. These are patient driven examples of a growing trend for internet sites and networks run by health

While the roles of patients are still not clear as part of digital health, their role in curating their records and monitoring treatment has moved quickly. The patient is no longer the object of treatment, but an agent in detection, decision making, treatment and ongoing monitoring. They could easily transform into citizen scientists, from early detection to technology driven treatments. This may seem like a brave new world scenario, but monitoring and treatment implants are already in early stages with non-communicable diseases and stress related health problems. Patients have access to digital health; to their data and reports; new technologies to monitor symptoms, diet and exercise; learn about medical conditions online; and connect with other patients networks with similar issues.

In this chapter, we propose that health systems benefit from investing in building capacity for peer research that informs research on existing practice and innovation. For example, online care hubs are being designed to provide chronic care support to remote and marginalized populations. They may include existing professionals and new options such a nurse practitioners, health technology assistants and health mentors. These teams will be able to monitor signs, symptoms and interventions. Patients can also be engaged through hub social networks that are becoming dynamic, engaged platforms that encourage patient sharing and patient control of monitored and patient provided data. This combines the formal evidence based goals of health and emancipation of patients.

It is perhaps here that the RRI, OIS, Ashoka and Citizen Science options provide guidance in using existing health and academic research systems in conjunction with community development to support the engagement of communities and individuals in health research. RRI promotes democratization of health care teams, citizen science recruits citizens as co-researchers and Ashoka draws on the student and faculty resources to support community changemakers and social entrepreneurs to build community business. Unlike academic research, the focus of these new models is on establishing research that is nimble and able to change as needs and technology changes. These initiatives begin with the expectation that new options will include community and patient participants.

The following section introduces alternative views of health systems that were used to design a theoretical model for the last section which describes health systems from four perspectives.

Alternate views of health systems

The concept of healthcare based on real life experience can help patients, communities and health professionals create new views of a health system. This is already happening, using online and locally supported population options such as Maple (https://www.getmaple.ca/) and chronic care online health hubs. Maple is already providing back up support in provinces that have long wait lists for primary care. These online health networks and hubs can analyze the services that build confidence and resilience, and apply that to systems that may be inadvertently preventing emancipatory partnerships. This is where the potential of information and digital age medicine currently resides. These new paradigms encourage us to move beyond industrial age medicine, where the system produced health for the patient who was ‘invalid’ and information age medicine where access to information is open to patients, to digital health.

We now look at social ecological system frameworks that have informed the study of how systems impact seniors or PWLE living with conditions such as mental health, disability, and a range of acute and chronic health conditions. The original social ecologies emerged while working in Russia and Japan. Most recently, they have been used as part of a design thinking course for senior undergraduates and graduates. The final model presented is a template to identify systems patients use, or could use, to deal with their health concerns as part of peer research.

Emancipatory science, supported by design thinking and social innovation, pivoted from the existing evidence based, standardized health systems to the particular, unique and contextual factors that consider people not as classes or conditions, but as individuals, agents and members of communities. In this, health is not quantified or permanent, but a state of being. The goal of professionals in emancipatory health science and design thinking is to support and extend patient expertise and the capacity of patients and communities to be part of healthcare transformation. The SMART framework in Saskatchewan, Canada is a courageous combination of citizen science and participatory research that reflects the direction of the emancipatory science of engagement in health research and innovation. In particular, the article attempts to use computational technologies to explore new systems approaches to support transformation.

The forerunners of all democratic movements in health are the disciplines and advocacy based professions that began with women’s studies, race studies, Indigenous studies, and disability, aging and mad studies. These new disciplines are emancipatory and focus on changing policy and programs to foster role equity through challenging systemic discrimination and labels. These new programs and services shift from remediating deficits to fostering capacity and rights of patients as stakeholders. These pioneers are fundamentally challenging historical and economic power imbalances in healthcare to lessen systemic discrimination.

Increasingly, health and rehabilitation professionals begin their journey as undergraduates in cultural studies programs, learning the foundations of critical thinking. They become more comfortable working in contested spaces, with the ability to create synthesis from multiple standpoints. They are creating innovative communities with peer based and consumer driven options within health. Existing rehabilitation professionals are migrating into community based wellness and rehabilitation services.

A peer led investigation of primary care systems from a patient perspective

This consultation was carried out by the PaCER program at the University of Calgary for the Health Quality Council of Alberta (HQCA). The goal was to provide an independent snapshot (map) of the primary care network (PCN) systems from a patient perspective. Patients were recruited from three key groups within primary care - seniors, occasional users, and patients living with chronic and complex conditions. These representatives were recruited from five provincial patient organizations and included urban, small town and rural Albertans, a balance of age and gender, with diversity in cultural backgrounds. Patients, PaCER peer facilitators, peer recorders, HQCA staff and a film crew were involved. The film and the information gathered and analyzed were prepared as the introduction to a provincial primary care consultation to look at future directions from a patient perspective.

Each participant contributed up to five recent health incidents that required attention, along with the options they considered to address them. Over 240 incidents were identified and a surprisingly clear picture emerged about their use of health systems at the primary care level. The resources were compiled and categorized and system maps from a patient perspective.

Figure 9.2 represents primary care from the perspective of occasional users. Their health system aligned with the primary care system as presented by HQCA. They saw primary care with two main connections - the primary care network and specialists. They also recognized their personal use of online resources and emergency departments. This simplified notion of a primary care system reflects communion understanding of most occasional users.

Next, in Figure 9.3, we see a primary healthcare system from a senior’s perspective that is grounded by a ‘family doctor’ as the center of their health system, along with the doctor’s nurse or alternative who provides access to other services. These include ongoing nursing support, nutrition, specialists, diagnostics and other services. The PCN plays a much smaller role.

Doctors link to the emergency department or hospital for urgent and transitions to services such as home care. There is also an interesting connection between walk-in clinics that suggested links to complementary care and mental health supports.

The role of the emergency department was of particular interest as a community resource, especially in rural areas. In addition to handling emergency care and their natural links to hospital services, they seem to be an access point to specialists, private clinics and community resources. The link to the emergency department seemed particularly strong, and this mirrored a similar trend in other primary care diagrams as part of this workshop that reflected the after hours 811 calls when emergency departments are the only option open.

In Figure 9.4, we see primary care for patients with ongoing chronic and complex healthcare needs. Here, the primary role of the family doctor is replaced by the specialist or specialty clinic. Many of the incident cards spoke of specialist care that was not part of hospital care, but also not part of the PCN. Specialist connections included medical specialists, pharmacists, allied health (private physiotherapy, diagnostics), and complementary health providers (naturopaths, chiropractors, massage therapy, counselors, dentists). Natural support included self-help groups such as AA and church programs. Community services included mental health and community rehabilitation agencies for groups such as those with brain injury and strokes, persons with disabilities, and the Alzheimer’s society. This foretells the emerging chronic care hubs that are emerging outside of traditional health care.

The flow between the PCNs and medical specialties is reciprocal, but participants saw the specialist system as mirroring the role of the doctor in the bottom half of the diagram. The specialist system is more simplified than other systems and most patients noted that they would prefer that specialists provided more primary care functions rather than going back to their family doctor for referrals.

This report is available in the chapter resource section.

Most of the studies completed with peer research through PaCER are located within existing healthcare systems and innovative systems designed to overcome systemic barriers. We now pivot to specific examples of how to open the discussion of healthcare systems that promote change. We begin with an early example in Russia that introduced the need for a simple tool to help psychiatrists understand how community mental health might be introduced as part of Russian psychiatric care.

A community mental health system in Russia

I came to understand the power of systems during the collaborative efforts of Community Rehabilitation and Disability Studies (CRDS) at the University of Calgary and the Russian Institute of Psychiatry. The goal of this 10 year collaboration was to expand the Russian mental health system from a reliance on large institutions and to develop community options. This also involved consumer led community mental health program called Fountain House that was similar to Clubhouse in Canada. These three systems: psychiatric institutions, community health professionals and support for Fountain House marked a significant system change for Russian psychiatry. This article is available.

In effect, we were introducing a social innovation by creating a community mental health system. Russian patient members of Fountain House and a family movement were allies in Russia, and members of our Clubhouse acted as mentors and hosts of the visiting Russian team for each Russia Canada visit. These patient mentors met the Russian team at the airport, settled them in their accommodations, took them to each session and acted as their guides and instructors. The Russian team was initially reluctant to be reliant on ‘patients,’ but soon came to appreciate the capacity of the mentors and the partnerships they formed. It was a powerful tool in readjusting the distinct power differentials that existed in psychiatry in Russia.

I was responsible for opening a debate about healthcare systems in mental health. We began with our shared focus on science and research. During two weeks of sessions with psychiatrists from across Russia, we discussed common social problems for citizens with mental health concerns - from employment, physical activity, housing, family support, legal and political issues.

During the first few days, all situations produced a common response - refer to the hospital psychiatrist. Carefully, we created hypothetical services and supports that could be created within the community to be offered by other professionals. It was difficult, but as the psychiatrists became involved in a co-design process, they began to see that there could be alternatives to psychiatric hospitals.

The simple tool in Figure 9.5 allowed the participants to experiment with community-based psychosocial sub-systems. The outer rim captured the goal of Fountain House, a community mental health recovery system with the goal of reclaiming self and personal meaning as part of an integrated system of peer support. By the end of the sessions, we had created a simple system for community mental health, consisting of three concentric circles. The article was published in Russian, and the teams met regularly to develop community resources and training programs for psychosocial rehabilitation.

• The center combined science and community psychiatry, which was synonymous with all psychiatric support inside and outside of the large institutions (and most often located in the institutions). Psychiatrists were the main professionals, looking after medical interventions, family support, employment, and funding.
• The psychosocial circle represented a separation of medical psychiatry and new professions such as social work and community rehabilitation specialists in work, living, leisure and physical therapies. This ring was extremely hard to conceptualize, because few professional traditions or psychosocial training programs existed apart from psychiatry. This was called a coping circle.
• The outer circle represented recovery, based on the principles of Fountain House about reclaiming useful roles in society and sharing the development of personal meaning through peer support.

This simple tool was used to develop models for teaching in my home faculty and publications. It has been used with quality improvement, community based participatory research, peer research, discourse analysis and program evaluations.

Disability, aging and mental health studies

Figure 9.6 is a template of a social ecology of health systems, created as part of the study of health systems in the Community Rehabilitation and Disability Studies Program (CRDS). The disability section includes:

• Medical rehabilitation that includes diagnosis and treatment, primary care, specialists and emergency departments in order to reduce impairment and support health of disabled persons, seniors and those living with mental health challenges.
• Psychosocial and community rehabilitation therapies and clinics, including many complementary options to remediate health related problems work to improve coping skills and the ability to function.
• Independent living and disability/aging and mad studies focus on peer and natural supports and main street services, to find meaning and reclaim productive roles to make a difference in their lives

While this was developed specifically for disability, aging and mental health systems, it can also be applied to systems such as hospitals, acute, long-term, chronic, palliative and primary care. The template can be used to support researchers, both academic and peer researchers, looking to learn about the systems when beginning an action oriented research project. It can be adapted to identify policies, programs, procedures and relationships for any group or community.

A general template for patient perspectives of health systems

The template in Figure 9.7 grew in an attempt to consolidate options identified by students in disability studies, that include medical rehabilitation students, disability studies students and education students. Much of the input came from reviewing Grey Matters and PaCER research projects.

The science of medicine: Biomedical

Science systems have been the driver for health transformation and technology innovations, but new patterns of innovation are also emerging, notably, social enterprise initiatives that come from community needs and maker spaces that bring together citizens with diverse talents and interests to use technologies such as 3D printing to solve pressing problems.

Finding and fixing health problems: Medical diagnosis and treatment

Diagnosis and treatment is the translation of science to practice. In Canada, diagnosis and treatment rests within primary care, with links to specialists and hospitals. It is a pluralistic system of public healthcare delivery, quarterbacked by group physician practices. This operates within the Canada Health Act principles with provincial single payer agreements. Patients seldom understand the intricacy or politics of federal agreements and provincial healthcare delivery, or how these create obstacles to social change.

The primary care system differs dramatically depending on the patients using the ‘system.’ When a patient engages with primary care or emergency departments with a ‘magic bullet' condition, i.e. an identifiable cause and an approved treatment, the health system can operate with almost big box efficiency. The Hello Health movement is an example of a growing global movement to standardize care for routine healthcare needs outside of our current primary care networks. As an almost automated primary health system for common health issues, systems such as Hello Health and Maple could threaten the viability of the ‘family doctor,’ who is a local ally and advisor throughout life.

Regardless of the model of care, the role of primary care physicians and specialists is changing dramatically within the fourth industrial revolution, especially as artificial intelligence and machine learning combine and analyze digitized data from a wide array of new sensing and tracking devices, computerized tests and records. Through this deep medicine, advanced and personalized algorithms and protocols will become available to patients and a variety of healthcare providers, changing the diagnosis and treatment paradigm currently in place.

Medical professionals are already preparing for these new developments. New medical information specialists are being prepared to work with patients to help them understand and make decisions based on patient owned and generated data. Patients need to prepare to take advantage of these new directions in patient managed care. Patients are beginning to curate their own health information, share it with treatment options, research opportunities, and connect with others with similar problems to share ideas and combine resources. While healthcare systems are still trying to create communication platforms for basic health appointments and records, digital treatment choices are being made by patients and their families on the internet. In many ways, new patient driven ways to use personal data have the markings of incubator spaces that are driven not by systemic problems, but opportunities for change.

Patients are not alone in recognizing the power of deep medicine, private clinics, pharmacies and new consumer hubs in using the streamlined diagnostic treatment links to create new options for healthcare of common and chronic health concerns. The issue of ownership of information at this level is hotly contested among health systems, diagnostic systems, patients, governments, pharmacies and insurance companies. Whatever the outcome, the increasing patient access and ownership of innovations are likely not to be reversed.

The identified technologies in primary health care relate to the use of algorithms that promote effective treatments based on artificial intelligence and machine learning. These algorithms, while effective, are based on data that needs to be free of bias, with constant oversight of recommendations.

In summary, primary care is the first system to be impacted by the fourth industrial revolution and will lead change throughout health systems.

Managing symptoms: Allied health professions and continuing care

Patients, including seniors and persons with disabilities and chronic and complex health conditions, have been part of a major systems shift in primary and specialist care. Allied health teams have been funded as an extension of primary care. Beginning as a way to reduce costs, allied health teams were created to distribute healthcare to less expensive healthcare providers. These multidisciplinary teams included health management nurses, clinical pharmacists, mental health professionals, social workers, dieticians and others as identified by the population being served. These professionals cover a range of healthcare supports under the umbrella of tertiary (symptom management/rehabilitation) prevention to support lifestyle change such as diet, overcoming addictions and remediation of deficits

Patients in these chronic care systems learn to tell new patient stories about themselves. As they are socialized to use new language and routines of clinic protocols, they see themselves defined by their condition and the allied health professionals they rely on. This may seem appropriate within a primary care, time limited approach, but ongoing exposure to medical identity creates barriers to patient capacity building beyond the chronic care system. The following quote from Transforming Care for Canadians with Chronic Health Conditions outlines the purpose of this initiative:

“All Canadians with chronic health conditions have access to healthcare that recognizes and treats them as people with specific needs; where their unique conditions and circumstances are known and accommodated by all of their health providers; and where they are able to act as partners in their own care” (Nasmith et al., 2010, p. iv).

However, this new system of continuing care could produce new peer support approaches, but there are many obstacles. Health professionals have not been trained to engage patients in peer support, education or co-design of programs. The focus of most allied health ventures in peer support include selecting and training peers to work as assistants. It has been hard for professionals to delegate peer support to existing peer support programs in the disability community and the same appears true from our peer research. It is not uncommon for health authorities to recruit, train and hire successful peer support volunteers in order to extend professional care. This is particularly common when working with marginalized populations such as those dealing with addictions, poverty, and mental health issues that have low access or uptake of health system services. This practice professionalizes peer support.

In the meantime, projects such as the Wellesley Centre in Toronto, the HIV/ AIDS communities across Canada and peer research such as PaCER provide examples of how to capture the experience of people in their own voices.

Multidisciplinary continuing care will be dramatically revisioned through technology. Not only is this industrial revolution targeted to reduce the burden of disease and care, it is dramatically changing home care programs. The rising costs associated with chronic care have fast tracked wearables, implanted sensors and personalized robots which will alert care providers of concerns as they arise. AI analysis supports online digital interventions that assess and address needs. At this stage, the future of an internet of things (devices) is moving quickly, and the eventual destinations and outcomes are anyone’s guess.

Recovery, rehabilitation and psychosocial health systems

Finding a new normal in everyday life is about adapting or regaining everyday skills and relationships. It remains a deficit based approach that relies on assessing functioning and creating plans to reduce deficits or to reestablish former skills as part of emerging roles and responsibilities. Physical rehabilitation (physiotherapy, occupational rehabilitation and speech therapy) focus on regaining function and competence. Many psychosocial options began as mental health related programs to teach emotional, cognitive, and social skills. These two approaches have been merged and specialized to overcome the lasting impact of illness, accidents and trauma.

Cancer provides an excellent example. More cancer patients become cancer survivors as new treatments reduce mortality rates. However, the impact of treatments and the fear or recurrence leave many incapacitated. Cancer specialists have created a major psychosocial or rehabilitation response to support survivors. This is significant because this response occurs simultaneously within the medical system and within community services.

These two options are significantly different. Psychosocial rehabilitation tends to be funded by the hospital cancer system and uses professional interventions and health professionals. Community, patient run options are more aligned with the next two subsystems, community inclusion and peer support. The main difference is funding and costs; formal programs cost more and are government funded, while community supports rely on fundraising but are less expensive because of the use of volunteers and peer support.

Psychosocial teams, unlike allied health teams, tend to be interdisciplinary, where each professional is more independent in assessment and treatment because they are less dependent on medical compliance and oversight. Most teams have a common focus, for example, mental health counselling clinics, physiotherapy clinics, or head injury programs. Their means of funding is variable, including combinations of provincial health, health insurance, health associations or fee for services. Therapy is more likely to be connected to health funding when they use approved medical protocols. These protocols reinforce status among professionals who may be paid on different scales. There is the risk of creating a ghetto of ‘ancillary’ professionals not formally recognized who are seen as assistants that are supervised by approved healthcare professionals.

Patient roles reflect their perceived deficits - they work to adapt to each therapist they work with. They speak the language and aspire to the goals of therapy. Patients often feel anxious about leaving these supportive programs. The role of peer support in many of these programs face similar problems as noted with allied health teams. Peer support tends to be a program, with supporters trained and supervised to act as assistants carrying out program protocols. There is little room for natural peer support, unless connecting with clients is encouraged outside of program activities. In some situations, peer support is discouraged because it may distract patients from the approved - and funded - programs.

Therapy programs are a breeding ground for physical and biological engineering of assistive aids that can be funded by government allocations. The rapidity and scope of the innovations emerging at the intersection of biological and physical functions will be heightened by the addition of new digital technologies, which enable computer assisted movement and communication. Technologies such as virtual reality and gamification are increasingly used in psychiatric and physical rehabilitation.

My places and roles: Community inclusion

Community inclusion is the first of the systems not controlled or funded by provincial health budgets. Funding is provided by provincial community services, health charities, United Way and a variety of foundations. The concept of community services began from the early adult training and employment services for the blind after the First World War and the Halifax explosion in 1917. Community inclusion began through the developmental disability family movements of the 1950s. Special schools were established to prevent institutionalization of young children who grew up and into sheltered workshops, to allow people with disabilities to ‘go to work’. Early sheltered workshops were soon replaced by training and employment options that taught age-appropriate employment skills. These, and all other community inclusion options, are not considered to be part of the healthcare system, per se, and staff are not considered health professionals.

Community support is considered essential to achieving health for persons living with disabling conditions, including many related to chronic health conditions such as stroke, MS and other neurological conditions. Most staff working in this area are trained to support PWLE with a variety of conditions at colleges and universities. In a community inclusion system, programs specialize in everyday roles and relationships, including those in employment, living together, and integrated social and recreation supports. It is also true that adults in disability specific programs find companionship, peer support and accomplishment. Regardless, staff in this outer ring of systems see themselves as allies in achieving integration and providing support when obstacles arise.

There is a growing movement to support integrated schools, workplaces, and leisure that reduce the stigma and isolation of PWLE. This will be accelerated as technology and assistive and communication devices related to mobility, employment, and living at home become widely available. As the burden of illness and disability is reduced through early intervention and technical adaptations, we will see a dramatic extension of productive life years for everyone. The tenor of community inclusion and support will shift as former clients become employees to meet the projected employment gaps. This is about realigning health as everyone’s civic responsibility.

My right to belong: Natural, mainstreet services and peer supports

Originally, I thought that health policy might be part of a patient perspective of health systems at this final level. Instead, policy seems to fit at the levels where healthcare funding creates blockages or gaps in accessibility and practice. At this final level, patients are more interested in being able to choose supports that reduce stigma, because they are used by everyone - massage therapy, mainstreet physiotherapy, a scooter instead of a wheelchair - and as technology improves in mobility and other assistive devices, seniors, patients and persons with disabilities will continue to be a growing market sector.

It is here that the issues of inequity are challenged and can be addressed, because the underlying wicked problems are reduced by the familiarity of local situations that provide innovative and local solutions. The concern for social determinants of health and social responsibility may thus be played out, one community at a time. We now come to the end goal of an emancipatory health system from a patient perspective that is grounded in equity, social justice, and emancipation. It is, at this outer ring, that the focus of health shifts from ‘cure’ and ‘fitting in’ to the right to belong and thrive because we are enough just as we are. To begin, we must understand how JEDI principles can be embedded in organizations, systems and society. There are also JEDI guidelines in most universities and healthcare systems. This particular ecology is focused on JEDI as a force for innovation and systems change. The following definition of equity from that site summarizes this final ring of the diagram:

“Equity about promoting justice, impartiality and fairness within the procedures, processes, and distribution of resources by institutions or systems. Tackling equity issues requires an understanding of the root causes of outcome disparities within our society.” (Tuskegee University, n.d.)

It is here that we focus and work toward what an inclusive society might be like. Patients and communities align with innovative consumer services, new political allies, peer support initiatives and mainstreet services. This system, if it is to be called a system, also includes web chat rooms, peer support groups, along with citizen science research and open science. We also find community innovation and social enterprises being led by citizens and PWLE.

The following is an early pioneer in this ecology, the international recovery movement called Clubhouse. Clubhouse grew from the Fountain House movement in the late 1940s by a group of six patients who met in an institution to share stories and find new ways to deal with the challenges of discharge. They knew that they needed to find housing, meaningful work and relationships and ways to handle the challenges of fluctuating mental health. They did so by creating a model similar to co operatives run by members who worked as part of the clubhouse.

Today Clubhouse is still a social enterprise which has created an alternative to psychosocial rehabilitation clinics and programs. The success of Clubhouse has replaced many psychosocial and community inclusion mental health programs and, in many jurisdictions internationally, these peer support programs receive government funding to promote community inclusion. Like most health based social innovations, Clubhouse changed as health dollars were funneled to these effective recovery membership centers. With the legitimization of funding, Clubhouse became a sought after employment option for mental health professionals.

Many new social movements operate in this space. They are strengths based, building patient and PWLE capacity to take up work, the arts, sports and peer support using their skills and talents as they are. These programs are natural sites for collective action, capacity building and problem solving.

Voices of Men is a peer driven organization that performs for mixed gender and single-sex groups as part of the men’s social movement to reduce sexual assault, domestic violence and sexual harrassment. It uses humour and male celebrity voices to show that men can be both part of the problem and part of the solution.

A social movement called The Phoenix is a national network of volunteer-led programming battling isolation. Participating in The Phoenix’s activities, from rock climbing to yoga, gives individuals activities to occupy their time and achievements to help those fighting addictions build a sense of themselves as capable and strong. This constitutes a psychological bedrock and a new community, which helps build lasting recovery.

Disability and mental health, aging and Indigenous studies were the first health related groups to evolve through the above continuum from conventional healthcare, psychosocial and community inclusion. They were also the first to move toward peer and membership-based support. It is no longer an issue of ‘fitting in’ but the right to belong. If we focus on fitting in, the emphasis is on the deficits of the person who must be trained to be more ‘normal.’ The right to belong asserts that everyone has the right to be a member of society, and the focus is on making society accessible and inclusive.

University programs that promote emancipatory social science, align with a social ecology based on JEDI principles and the study of systemic discrimination. Ashoka changemaking is a major contributor to this space, using academic resources to work with communities to co-design and implement social enterprise. Both are supported by emancipatory social research that involves groups in creating their own perspectives and challenges in order to confront sources of long held marginalization. The move to rights also highlights responsibility, such as involvement in healthcare, curation of health records, and managing personal healthcare.

This space is more than a site of innovation and social rights. As a site for social enterprise, it has the potential to address the major obstacle to community development - how to pay for the innovative services developed. It is here that I introduce an alternative to grants. It is individualized funding through service brokerage that puts funds in the hands of families and patients to purchase the services and supports they need. Without a monetary system such as this, which is currently evident in assured incomes for veterans, persons with significant disabilities and handicapped children’s allowance, there will continue to be a charity aspect to the right to live in the community. Without the right to purchase and evaluate needed services, there is no equity.

An example of how the above health system tool might play out for seniors

Geriatrics level is informed by the science of aging as the biomedical treatment of conditions related to aging. It is the practice of biological decline, with treatment being informed by biological markers. For example, a study of resilience might look for resilience genes, or how people who are resilient are different from those who are not, according to some characteristics like adrenal functioning, health status, or depression. The language deals with slowing loss or decline and is home to metaphors such as ‘the grey tsunami.’ Some refer to this domain as reverse development, as assessments use age markers. While essential, many seniors feel defined by the degree of loss.

Recovery, or psychosocial or gerontological level of healthcare and research is devoted to ‘reducing the problems of aging,’ and tends to be found mostly in professions such as social work, nursing, rehabilitation and psychology. Gerontology is the scientific study of the bio-psycho-social phenomena associated with old age and aging. These professions bring their disciplinary gaze to seniors’ experiences so that professionals and policy-makers can be more effective in providing service and policies. Gerontology research also uses patient reported experience measures (PREMs) and standardized data measures as well as qualitative research to describe common reactions to the aging process. Seniors who come into contract with psychosocial rehabilitation learn to see themselves through the lens of the therapists they are provided. These therapists not only provide adaptations, they are the gatekeepers to needed assistive devices. Most seniors learn quickly to work within the boundaries of the therapy and to compartmentalize their lives to fit.

My place, community inclusion, focuses on aging studies which is a relatively new field. This emerging field of study is related to healthy aging and was the foundation for the Grey Matters project. Here, the focus shifts to tapping into the expertise of seniors (values, beliefs, language, media) and the politics of aging. In many ways, this new area is like women’s and disability studies, although the academic roles of seniors have yet to be widely accepted in universities.

This research is closest to the interests of seniors. It clearly states that aging is not an illness or disability, nor is it a problem. Aging happens to everyone and, like any other stage of life, becoming older has advantages as well as challenges. Aging studies would place the ‘problem’ not with individuals, but with society that tends to use age as an excuse to marginalize older people because they are seen as being less productive once they reach ‘a certain age.’ With the loss of status and place in their communities, seniors often lose connections, struggle on fixed incomes, and become overwhelmed with the illnesses of idleness.

Patient experience in aging studies is considered from a patient perspective and joins a host of other traditions including health professionals who write as autobiographical ethnographers about their experience as patients. COVID-19 has brought awareness to the systemic discrimination of seniors who live in congregate care. It was interesting that the battle cry came not from seniors advocacy groups, but from medical staff and researchers. There is a long way to go, beginning with changes in each of the levels within the systems as seen by patients.

The focus on critical theory and social justice fuels the last level in seniors’ health systems.

My right to belong is represented by seniors’ advocacy, action groups, and peer support that includes the adoption of universal design and mainstreet services. The normalization of accessible architecture and assistive devices (designer scooters and easy to use kitchen utensils) that are used by everyone is a beacon to those who manage to live outside the healthcare system for seniors. It is here that the Grey Matters research on resilience demonstrates a different systemic approach.

It is now easier to identify problems faced by patients and PWLE in achieving the roles they aspire to and the relationships that may promote or constrain these aspirations. Dramatic changes in professional roles are possible when, as a group, they decide to adopt other ways of working that promote confidence and personal agency in those they serve.

You are invited to create the template in your area of research or practice, and to use this to consider potential ways of increasing patient involvement with their own health and healthcare. This understanding of current and potential roles will help define the patient experience research needed to be done.

An example of health systems in social enterprise

One of the best known social enterprises in the UK, Greenbank College, began as a challenge to existing health based institutional services for physically disabled youth in Liverpool. The existing system consisted of an institutional residence built for polio survivors, nurse run group homes, and education provided through the institution. Decisions about treatment and future occupations were made by staff. It was a benign system that socialized young people to become patients, dependent upon the healthcare system when they grew up.

Gerry Kinsella, a polio survivor and the founder of Greenbank, led a campaign to raise funds to buy the original institution and started a college with apprentice style training and employment options. He received European Union funding and began to expand in direct competition to sheltered workshops. I spent time at Greenbank as part of a study of social innovation, and together we studied the programs - a prosperous training college, an athletic wheelchair company for competitive sports, a competitive recreation program and a whole food restaurant. They had, in effect, created a parallel system to the expected health system for physically disabled youth. The following is a sample of the roles and relationships within the system of Greenbank projects above.

Others control my health - diagnosis and treatment: past places included institutions, group homes, workshops and nursing and home care routines. The ‘patient’ experiences were marked by negative self concept and excessive external control by care staff and systems. The data captured themes of vulnerability, fallibility, risk, protection, control, anger, and despair.

My place - community inclusion: The Greenbank site included a variety of training programs. Experience here was identified by concepts such as accepting, curiosity, self-help, receptiveness and affection. Experience was marked by a positive self image, with positive external support of peers. The themes spoke of exploring, ‘give it a go’ and peer support that created new roles as students, learners, risk takers and part of the peer community.

My right to belong: Smithdown was the mainstreet competitive business site. It included the wheelchair manufacturing company, a whole food restaurant and a consignment store. The experiences were clearly identified - competent, independent, willing to risk. The new environment and expectations created new roles as citizens and employees

Analysis of systems from a patient perspective

This last section suggests some research methods not covered in sections one and two that are more appropriate for research focused on making a difference within health systems. They relate more to the need to identify and explain systems blockages and understanding patient experience from their perspective. These systems related methods will be integrated in the research options in Chapter 11 that combine the methods from section one and two with new work to prepare to bridge between academic research and design thinking of social innovation and social enterprise.

Crowdsourcing

As health research adopts citizen science as a bridge between academic research and social innovation/enterprise, online research options such as crowdsourcing reinforce the needed ability to reach diverse populations to address JEDI requirements in specific health systems. The first round of research might include the request to identify the health systems or services a specific population uses, and these could be plotted on a system template, as presented in this chapter. A template that reflects the health use or lack of access could then be sent back to the online participants with options to include stories about the systems that work well, why the systems are used and stories about the gaps, conflicts and lack of access. A third round of online crowdsourcing might select several systems and ask participants to vote for the one that should be addressed first in research. From there, crowdsourcing could build on the existing online populations to conduct more detailed research.

Narrative analysis

Narrative methods have been used in peer research to solicit stories of personal experiences in health systems as part of research to explain the blockages in these systems from a patient perspective. We now extend this to discussing how peer research might inform social innovation to resolve or reframe existing problems in health systems. In looking back over the reports and projects in the PaCER PRISM hub, I was surprised to see how many of the suggestions related directly to systems blockages and the creation of new roles, relationships and programs.

The process of identifying blockages begins with co-design, where the main concerns of patients are identified from a number of perspectives using online and in-person consulting as in the following examples.

• In a recent research internship related to young people with inflammatory bowel disease, two teams came up with topics related to their relationships with food. The group identified an interesting finding. Patients initially were looking for professional support in managing unpredictable reactions to food. After conducting their study, they had a new understanding of the blocks in the system and patient experience. They realized that it was important for patients to find their own way to develop a healthy relationship with food. They suggested that professionals needed to support patients after diagnosis and provide resources for how patients manage their food through unpredictable reactions, changes in diet, and family traditions. This required a mixture of patient expertise and professional support.
• In an early study that was to identify appropriate wait times for hip surgery, peer research discovered that patients were interested in what they could do while waiting for surgery, in order to be prepared. Their research identified serious system blockages, which included unnecessary appointments that took many months to sort out and the lack of information about what they could do to prepare for successful surgery and recovery. Their experience before surgery was a mix of frustrating appointments that did not prepare for surgery and a lack of ideas for exercise, diet and reading. Their research had a major impact on preparation for surgery, driven by patient input and analysis

Discourse analysis of systems

Discourse analysis is likely the most effective tool in social innovation because it lays bare the obstacles to emancipation and progress through the language used by those in power. Those who struggle for power study the language of those in power, while those in power seem unaware of the impact of the language they use (McCauley, 2013). Relational Cultural Theory provides a theory base to using groups to build strong motivation for action.

Discourse analysis can be part of co-design or data analysis. Online resources are ideal for this work because they are the forward facing representation of systems that describe the services and programs provided. The following is a simplified discourse analysis process that quickly identifies distinctions between different systems in the concentric circles, which can be done by students or peer researchers:

• Who is the author and what is their relationship to the reader or the patient? For example, what authority or power is in play:
  • Expert, colleague, victim, ally/advocate, scientist, professional, program director
• Language cues that identify power imbalances
  • Pronouns: Who is the ‘I,’ ‘she,’ ‘we?’ Identify if the patient is being acted upon - ‘me,’ ‘her,’ ‘them’ - or is an agent - ‘I,’ ‘we,’ ‘they.’
  • Verbs: are there signs of patients deciding, acting and making progress, or are the verbs a sign of being acted upon?
  • General tone of language: identify the type of language being used. Is it professional language, colloquial or collective language, or inspirational and goal focused language?
• From the above, you can identify roles in the text, what is expected of each, what is the power balance, what happens if the patient doesn’t play the roles expected, and what does the person gain from playing this role.

Summary

This chapter looked at health systems from a patient perspective to uncover obstacles within the current system. We introduced a patient perspective of a health system that incorporates not only funded and established illness care, but a continuum of care that includes wellness and equity. This is important because of JEDI principles of diversity and inclusion that underlies the systemic barriers to culturally and population based care.

This made it possible to consider the forces of innovation and how they relate to a patient and community view of health and health equity as a foundation for making changes in our current health care systems. In this chapter, we also begin to introduce new research methods that can build patient and community awareness of the tools of innovation that are designed with them in mind. These will be presented in the following chapters.

Questions for consideration

1. Where did you find yourself on the systems maps introduced in this chapter?
2. How would the templates work as part of your research or peer support work?

Resources

Use of discourse analysis to understand different healthcare options for moral injury

The following is a group process designed to teach systems analysis using the template and a simple group casebook in an undergraduate course in innovation in health research. Each person chooses a subsystem from the template, locates a website or document about that subsystem, and then uses a simplified discourse analysis to identify roles of patients and professionals that identify identity and agency (power and making decisions).

One of the students in the course agreed to share her work. One aspect of the case study is included in each of the chapters in Section 3.

The first framework that influenced the design of my moral injury social innovation was using a discourse analysis to understand how systems and institutions, defined as a collection of shared understandings that constrain and prescribe actions, impact the presence of moral injury. Viewing systems from a patient perspective revealed weaknesses of the traditional treatment and diagnosis system that prevented patients from becoming well. It also prevented healthcare professionals from fulfilling their duties, while revealing the elements of community inclusion and peer and natural support systems that support patients in their journey to wellbeing.

See below for a demonstration of discourse analysis for the three systems introduced above.

My involvement with health systems began with large institutions for mental health and disabilities. These removed citizens that made the general population uncomfortable by claiming to care for their needs. I learned quickly about the dominance of hierarchy within these settings that extended not only to staff but stigmatization of patients . As an academic, I worked to understand how systems created restrictions for those they served, with seniors in long term care, disabled citizens in community workshops, profoundly handicapped children and youth in custodial institutions.

I also worked to create new systems that tried to reverse restrictions, legal guardianship, communications technology for disabled persons, new community mental health options in Russia, North America including Mexico, Independent living in England and Canada professional curriculums for teachers of profoundly handicapped and community disability studies, community mental health workers. As an academic, I studied systems from the perspective of an upstart, social justice program that seem destined to challenge established practices and through all of this became convinced that …..

Findings

In the deficit-based diagnosis and treatment system, the patient is passive and responsible for changing their worldview to correct the deficit. This is guided by a professional who decides when acts of making amends are sufficient or insufficient, thus decreasing the patient’s agency. The relationship dynamic is about conformity with the professionals deciding when the patient graduates from being ill to not-ill.

The example of a community inclusion system, the Whole Health Medicine Institute, acts against the hegemonic medical system by training healthcare providers to understand health holistically. Healthcare providers enrolled in the Institute have more agency than patients in the treatment and diagnosis system, but are still acted upon by the program. To be successfully treated, one must adopt the ethos of the program.

Supporting others can facilitate new self-narratives. The peer support system changes the role of patients from morally corrupt individuals to people who can help others and make meaning out of their experiences. Peers understand the unique factors that lead to moral transgressions and create a non-judgemental environment through which parties can redefine themselves. Power is horizontal rather than vertical, and the dynamic is one of relationships and learning.

References

Marlett, N., republished 2021, Impact and Alternative Business Models in Rehabilitation, in R.I Brown, Management and Administration of Rehabilitation Programs, ISBN 9781003110509

Lewin K. (1951). Field Theory in Social Science. Harper and Row.

McCauley, M. (2013, March). Relational-cultural theory: Fostering healthy coexistence through a relational lens. Beyond intractability. https://www.beyondintractability.org/essay/relational-cultural-theory

Merriam-Webster. (n.d.). Magic bullet: Definition & meaning. https://www.merriam-webster.com/dictionary/magic%20bullet

Nasmith, L., Ballem, P., Baxter, R., Bergman, H., Colin-Thomé, D., Herbert, C., Keating, N., Lessard, R., Lyons, R., McMurchy, D., Ratner, P., Rosenbaum, P., Tamblyn, R., Wagner, E., & Zimmerman, B. (2010). Transforming care for Canadians with chronic health conditions: Put people first, expect the best, manage for results. Canadian Academy of Health Sciences.

Tuskeegee University. (n.d.). Diversity, equity, and inclusion. https://dei.extension.org/

Wiecha, J., & Pollard, T. (2004). The interdisciplinary eHealth team: Chronic care for the future. Journal of Medical Internet Research, 6(3). https://doi.org/10.2196/jmir.6.3.e22