3.9. Patient Perspectives of Health Systems

We need a new science where researchers have access to both the both perspectives, the problem as they see it and the problem from our perspective —a patient reviewer

"You cannot understand a system until you try to change it" (Lewin, 1946)

Highlights

• Systems change through innovation
• 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

As I write this chapter again and again to keep up with the mounting threats, innovations and challenges to our healthcare systems, I realize that health systems have focused on efficacy and cost. Apart from the goals and values, we have generally missed the criteria to ensure our healthcare systems are open, flexible, responsive and based on JEDI principles of justice, equity, diversity and inclusion. Open Science and Open Innovation in Science are attempting to include non-traditional partners such as business, government and citizens to address the need for more creative, nimble and socially relevant responsible research and innovation.

Healthcare system research done by PaCER attempted to improve the patient's health care journey but seldom included opportunities where health systems and community based options collaborated. This chapter welcomes the growth of complementary, online, community, mainstreet services and options created by social innovation, social enterprise and digital health innovation. As patient connections are forming in health associations, patient emancipatory movements, online chat rooms, the research voices of patients and PWLE that would build resilience, empowerment and expertise are still largely missing.

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 such as INVOLVE UK, PCORI USA, SPOR Canada, support recruitment into research studies and increasingly support patient, clinician and patient researcher collaborations (Building PCOR Capacity with Newcomer Patients in Practice-based Research Networks) Independent peer led research is gaining a foothold in establishing a patient research voice outside of traditional health research streams.

There are however growing indicators in apps such as Zamplo, conceived by the husband of a cancer patient, that patients are curating their own health records. Zamplo members are able to choose treatment and research projects contributing their own data and a growing number of research initiatives also use Zamplo as part of their research management. It is providing ways for patients and PWLE to connect with other PWLE to think about research ideas and share experiences. 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 scientist and policy makers. It is making inroads in the sharing of data, data privacy and patient driven projects internationally and showing the possibilities of patient driven innovation.

Gender, race, culture and age based movements rely on the shared wisdom and collective

action to change systemic discrimination in practices and policies. Women’s, indigenous, disability, race and aging studies have been able to create emancipatory, collective research voices from peer perspectives that are publishable in academic journals. Design thinking, changemaking and social enterprise provide a different perspective in that the research begins when PWLE come together with changemakers to share experience, ideas and potential for change. However, in many studies the collective patient voice is a weak link, often reduced to token pilot testing of research protocols.

In this chapter we propose that health systems benefit from investing in building capacity for peer research that informs research about existing and changing health systems. Trained peer research teams become partners in conducting action research about developing and testing new practices, technology, organizational structures, and policies. The publication of peer research suggests new research roles as citizen scientists of their own health and health care.

The sharp increase in complex and chronic care among aging Canadians, and the high incidence of non contagious and stress related conditions that make up the majority of healthcare populations, will change over time as care shifts to prevention and promotion. The following is a model recently proposed that outlines this shift from highly specialized to population based health care.

Both the person and remote-care team can monitor their health. Patients can be engaged through social networks “Care Hubs” can act like a flight control centre, looking at the health of their population, based on a combination of streaming information from the patients and the health records they keep. These hubs could help patients whose data indicates the need of support, either by a two-way video consultation or a visit.

While the role of patients is still not clear, their role in curating their records and monitoring treatment is moving quickly. The patient is no longer the object of treatment but an agent in detection, decision making, treatment and ongoing monitoring. They will 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 that make up the vast majority of health care efforts.

In the future systems will need to become more nimble and innovative, finding ways to test new ideas using low risk testing and these low risk options seem to be best done by including communities, patients and citizens as partners. The science of engagement was developed to support existing and transitioning health services to include peer research as part of testing new options.

In this chapter we consider PWLE as equal opportunity health consumers, using a variety of community, self help and peer support services to naturalize their healthcare while maintaining connections to health systems. Compliance in this reality will change, as more patients curate their own computerized health records, are able to discuss their records with commercialized and online health providers and as more technologies emerge to diagnose, treat and monitor persistent conditions. It is anticipated that healthcare will shift more to a civic or solidaristic responsibility. There will be more pressure to enable communities and online groups to come together to identify, design and provide health supports that meet their needs in ways that can be changed as needs or opportunities change.

Community and national health hubs are already emerging in rural and specialized populations. It is perhaps here that the Ashoka and Citizen Science options provide guidance. Both of these use existing health and academic research systems in conjunction with community development to support the engagement of communities and individuals in health research. Citizen Science recruits citizens as co researchers and Ashoka draws on the student and faculty resources to support changemakers and social enterprise to build community business. Unlike academic research, the focus of social enterprise is on establishing community led enterprises that are nimble and able to change as needs and technology changes. These initiatives begin with the expectation that new options will include a community business model. The concept of healthcare is changing rapidly as technology, funding options and basic research and innovation are racing ahead and if patients are to take up the anticipated new roles we need to begin by creating concept of health care from a patient perspective.

Health care from a Patient perspective

Patients can build models of systems based on how they see their health care. For example a group of patients with rheumatoid arthritis who are attending an exercise class specifically for them, might, as part of a focus group with the physio therapist, share ideas about the other options that work for them, from a specialist that stays in touch with the science, a family doctor who connects with other health care supports, acupuncture, anti inflammatory diet support from a natural foods outlet with a naturopath and a nutritionist, Qigong practice, and a home health outlet that sells splints and adaptive supports. This could lead to discussions about each option and how to become more engaged, bringing confidence, personal control and experimentation into the health system.

The concept of healthcare based on real life experience and options can help patients, communities and health professionals create their own health system as is already happening using online and locally supported population options such as Maple, and chronic care specializations. They 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 resides . These new paradigms encourage us to move beyond industrial age medicine where the system produced health for the patient who was ‘invalid’.

During the rest of the chapter, social ecological system frameworks are used to identify ways to study how systems impact seniors, PWLE living with conditions such as mental health, disability and finally 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. The model presented in this chapter is a template to identify systems patients use, or could use, to deal with their health concerns.

1. The predominant role of science in health care systems

It is impossible to understand the organization of health care systems without first addressing the role of science as the touchstone of western medicine. The dominant science discourse is based on what is affectionately called the ‘magic bullet’. The bullet is the ‘cause’ that triggers the search for a ‘cure’. Unfortunately, before the cause is found, unnamed problems continue to circle on the sidelines. I remember being personally and professionally on the sidelines before learning disabilities, chronic fatigue and rare genetic diseases were admitted to medical science. The magic is not just the diagnosis / treatment link but the reinforcement of the promise of medicine. Those under the umbrella have access to public funds, those outside do not and must rely on charity funding, medical insurance or self funding.

The promise of medicine is about discovering truth through objective study, observation and statistical verification. It was marked by the move of science into universities and the monopolies of highly trained scientists during the industrial revolution. Government funding came with expectations that science would eliminate obstacles to a productive and healthy society. When I began teaching about health systems as part of critical theory and emancipatory social science with several physician scientists, we developed a simple way to categorize the discourses of health care.

The dominant science discourse was the Cause as identified by empirical science and basic scientists. This can be seen as the axle of healthcare because without a cause, the rest of the system can’t turn.

The next discourse is Cure which is linked to the Cause and the discourse community is best represented by specialists who filter the science and the cure to other health care providers.

Care is the discourse of tertiary prevention which addresses symptom management and rehabilitation for disabling and chronic conditions. This includes not only complex care systems but ongoing pensions and assistive devices that minimize residual loss.

The final discourse, Control is reserved for minimizing public threat from conditions that are not ameliorated by the other three systems, this includes public health threats, medications for deviant behaviour.

Each of these systems are populated by professionals, practices and policy along with professional literature and discourse communities who share language conventions. The status within this picture of systems is grounded by the value of science.

With this science of medicine came the health professions, mandated to ‘close the gap’ between what people can do today and what they could achieve if health problems were minimized. For example, children are routinely measured by developmental assessments to ensure that gaps or delays are identified and remediated. With this claim comes the implied promise of liberation from problems and a return to wholeness.

The role of the patient in this view of medical science is clear. They are already deficient or in danger of becoming so. This patient role is imbued with vulnerability which reinforces the need for professionals. This view of ‘health’ reinforced the rise of a problem focused society, where we, as citizens and patients become defined by our problems and our life work is to overcome our deficits.

Emancipatory science supported by design thinking and social innovation pivots from the above social institutions of health systems to the particular, the unique and the contextual factors that consider people not as classes or conditions but as individuals as agents and members of communities related to their health and health care. Health is not quantified or permanent, but a state of being that invites us to capture the interactions of people within their social ecology. The goal of professionals in emancipatory social health science and design thinking is to support and extend this expertise and the capacity of patients and communities to be part of healthcare transformation. The link 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. JMIR mHealth and uHealth - The SMART Framework: Integration of Citizen Science, Community-Based Participatory Research, and Systems Science for Population Health Science in the Digital Age In particular, the article attempts to use computational technologies to explore new systems approaches to support the transformation.

The forerunners of this movement are the disciplines and advocacy based professions that began with women’s studies, race studies, indigenous studies, and most recently 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 rehabilitation professionals begin their journey in undergraduate disability, indigenous and aging studies programs, learning the foundations of emancipatory and 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. But what are the alternatives for existing health professionals and health care systems? Existing rehabilitation professionals have migrated into community psychosocial clinics and consumer services such as physio clinics. The diagram below demonstrates this shift from industrial age medicine to information based medicine.

To complete this section, the following diagram attempts to depict the nature of the health care system transformation

Figure 1: anticipated change from industrial to information to digital medicine

Information age healthcare challenges the sovereign nature of health systems as patients become more informed about options and are able to network with other patients and healthcare options. Digital wellness includes our ability to prevent or lessen the burden of many chronic and stress related conditions and to focus on wellness with the patient, family and community in control. The role of the health system continues to support science, treatment options and interventions.

Information age healthcare provided the vision for the beginning of the PaCER program because patients were eager to use their new found information capacity to improve the health care system. Patients were early adopters of information and communication healthcare options and are also early adopters of digital options that increase their capacity to manage their healthcare and improve their health.

2. Evolution of Institutionalized Health systems

In order to understand current health care and the potential futures of health systems, we need to understand how health systems became so large and entrenched. In Chapter 1 we explored systems and how they socialized patients and citizens from the psychiatric and disability institutions, special education systems, palliative care and community alternatives for seniors and people with disabilities.

The evolution of health systems began between the two world wars, as Japan adopted an industrial model based on ‘extreme evidence based statistics’. After World War II 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 while adopting Japanese reliance on evidence that became known as continuous quality improvement(CQI) or total quality management (TQM). These provided the scientific, statistical foundation, clear authority hierarchies and evidence based decisions that supported standardized care protocols.

Industrial medicine and medical science then merged to create strong science based systems that justified government funding and control, along with the development of health professions. Professions were supported by science and secure funding. Most health care professions therefore work within medical 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. Medical science became a problem based system.

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

Health systems continue to consolidate health related services under an integrated health umbrella to meet new needs and reduce competition. Because health funding is stable and pays more than community services there is a constant pressure to become part of health systems. However, the pressure to consolidate impedes the forces of innovation and community based supports.

Design thinking, social enterprise, information technology, artificial intelligence and machine learning are part of a fourth industrial revolution that combines technology, physical and biological science. This fourth industrial revolution is challenging our inability to respond to profound societal changes with inflexible health systems. The speed of development presents both a threat and an opportunity for patients as they become the recipients and the focus of rapid evolution in care. If we are to make a difference to existing healthcare and research systems we need partnerships with patients and communities, new action research models, flexible and nimble change strategies. Regardless, the future seems poised to become more democratized with complementary, traditional and community based health options both within and outside of the existing healthcare systems.

3. Creating alternative perspectives of Healthcare systems.

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. PaCER designed and facilitated the day. Patients, PaCER peer facilitators, peer recorders, HQCA staff and a film crew were involved and this was captured and presented as a rough cut of the film at the end of the day. The film, and the information gathered and analyzed were prepared as the introduction to a provincial primary care consultation to look at future directions.

Each patient contributed up to 5 health incidents that required attention along with the options they considered to address them. Over 240 resource choices were identified and a surprisingly clear picture emerged. The resources were compiled and categorized and system maps from a patient perspective were presented including primary care focus on; The Doctor, Specialists, Emergency Department that represented seniors, those with complex health care needs, occasional users and rural / users without a primary care network.

The first diagram 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 primary care reflects common use of occasional users.

Figure 2 Primary Health Care from patients from the perspective of occasional users

Next, we see a primary healthcare system from a seniors view that is grounded by a ‘family doctor’ as the centre of their system along with the doctor’s nurse or alternative who provides access to other services. These included such as ongoing nursing support, nutrition, specialists, diagnostics and other services. The PCN plays a much smaller role.

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

Figure 3: Primary Care from the perspective of Seniors

The role of 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 from Health link to the Emergency Department seemed particularly strong and this mirrored a similar trend in other primary care diagrams that seems to reflect the after hours nature of 811 calls when emergency departments are the only option open.

Next we see primary care for patients with ongoing chronic and complex health care needs. Here the primary role of the family doctor is replaced primarily 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 primary care network. Specialist connections included medical specialists, pharmacists; allied health (private physiotherapy, diagnostics etc); complementary health providers (naturopaths, chiropractors, massage therapy, counselors, dentists). Natural support included self help groups such as AA, church programs. Community services included mental health and community rehabilitation agencies for groups such as brain injury and stroke, disability, Alzheimer’s society.

Figure 4: Perceived role of specialists within primary care.

The flow between the PCNs and Medical specialties is reciprocal but participants saw the specialist system referring to a broad range of options while 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.

Most of the studies completed with peer research through PaCER are located within healthcare systems and innovative systems designed to overcome systemic barriers. We now pivot to specific examples of how to open the discussion of innovation through systems analysis.

4. 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 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 large institutions to community options that included peer support groups that had started as part of an international mental health recovery movement as part of the Gorbechev era. The following is a short narrative of developing a community mental health system to expand traditional psychiatry. This involved community mental health - a new psychosocial focus that introduced allied mental health professionals, Fountain House and a parallel family support movement. This article is available in the resource section or link International Journal of Disability, Community & Rehabilitation.

While we didn’t realize it, we were introducing design thinking as a new and creative way of creating a community mental health system. The patient members of Fountain House and a family movement epitomized the empathy and engagement component of design thinking as the first critical step. Our Canadian team was able to reinforce this empathy and engagement by including PWLE with mental health diagnoses as part of our Canadian team. Members of our Clubhouse (the Canadian name for Fountain House) acted as mentors and hosts of the visiting Russian team. 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 valued their partnership with patients. 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 as a centre circle. 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 psychiatrist. Carefully we created hypothetical services and supports that could be created within the community to be offered by other professionals with training and support of psychiatrists. It was difficult but as the psychiatrists became involved in a co design process they began to see that there could be alternatives to mental health facilities that provided most psychiatric service.

The simple tool below allowed the participants to experiment with community based psychosocial subsystems. The outer rim captured the goal of community mental health recovery: reclaiming self and personal meaning within an integrated system of support. By the end of the sessions we had created a simple system for community mental health consisting of three concentric circles. The above article was published in Russian and the teams met regularly to develop community resources and training programs for psychosocial rehabilitation. In summary the concentric circles included the following.

Figure 6: Russian Community Mental health template for creating community based psychosocial services.

• The centre combined Science and Community Psychiatry which was synonymous with all psychiatric support outside of the large institutions (and 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 psychosocial 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 could be called a coping circle.
• The outer circle was Recovery based on the principles of Fountain house about reclaiming useful roles in society and sharing the development of personal meaning.

This simple tool became part of CRDS teaching and publications and has been adapted and used in co design, and analyzing systems using a number of techniques including quality improvement, community based participatory research, peer research, discourse analysis and program evaluations.

5. Disability, aging and mental health studies

The diagram below is a template of a social ecology of health systems created as part of the study of health systems in CRDS based on the

• Healthcare: diagnosis and treatment, primary care, specialists and emergency departments
• Psychosocial rehabilitation therapies and clinics. This space also includes many complementary options to remediate health related problems
• Peer and natural supports, main street services under the guise of social enterprise and commercialization of health (CoH), formerly reclaiming productive roles

Figure 7: Health and Health Care Systems in Disability, Mental Health and Aging.

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 in play when beginning an action oriented research project. It can be adapted to identify policies, programs, procedures and relationships for any group or community.

6. A general template for patient perspectives of health systems

The following template grew in an attempt to consolidate options identified by students in disability studies that includes both medical rehabilitation students, disability studies students and education students. Much of the input came from reviewing Seniors and PaCER research projects.

Figure 8

This section introduces a detailed patient perspective of a social ecology framework of health systems. Interestingly, this social ecology map also reflects a progression of systems: biomedical, body focus, symptoms, functional capacity, community skills, social policy and or meaning.

1. The Science of Medicine: (biomedical)

Novel Covid 19 is an excellent example of how science comes to the fore in times of crisis. Around the world we tuned into the latest scientific reports to weigh our options and risks. The rush to find vaccines and therapeutics became a 100 meter dash to the finish line, with the gold medal of prestige and economic advantages going to the winners. The promise of modern science of medicine begins with the ‘magic bullet’.

A substance or therapy capable of destroying pathogens (such as bacteria or cancer cells) or providing an effective remedy for a disease or condition without deleterious side effects. 2 : something providing an effective solution to a difficult or previously unsolvable problem. Magic Bullet | Definition of Magic Bullet by Merriam-Webster

The magic of the bullet is grounded in the belief that if you ‘find the cause, the cure can’t be far behind.’ The promise of finding solutions brings hope and security to patients. Once the magic bullet equation is identified, patients scramble to fit into the group that qualifies. Those without a magic bullet of a knowable cause often find themselves on the margins, or join health associations that raise funds for research to find the magic bullet. Patients work as ambassadors for research, sit on association committees and are invited to spread the use of new research informed treatments.

Peer research could provide another role for patients in pragmatic clinical trials. Peer researchers can become the bridge between communities (gender, race, poverty, disability) by recruiting and conducting research with groups that have been on the sidelines. These trained patients make it possible for basic scientists to feel secure as they try to work in unfamiliar territory.

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. Regardless of the source, funded grants or community business models, patients and citizens are critical as part of the science of health.

2. 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 health care delivery quarterbacked by group physician practices. This operates within the Canada Health Act principles with Provincial single payer agreements. Primary Health Care in Canada: Systems in Motion. Patients seldom understand the intricacy or politics of federal agreements and provincial health care 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 health care needs outside of our current primary care networks. As an almost automated primary health system for common health issues it could threatens the viability of the ‘family doctor’ who is an ally and advisor throughout life.

The role of Primary Care Physicians and Specialists is changing dramatically within the fourth industrial revolution, especially as Artificial Intelligence and Machine Learning combines and analyzes 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 health care providers, changing the diagnosis / 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, connect with others with similar problems to share ideas and combine resources. While health care systems are trying to create communication platforms for basic health appointments and records, the rapid uptake of integrated technologies place the resulting treatment choices in the hands of patients and their families. 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 are using the streamlined diagnostic treatment links to create new options for healthcare of common 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.

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

3. 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. Using the model of specialist clinics that provided ongoing support, 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 health care 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 Primary, secondary and tertiary prevention to support lifestyle change such as diet and overcoming addictions and remediation of deficits (Wiecha & Pollard, 2004).

As patients in these care systems, they learn to tell new patient stories about themselves. As they are socialized to use new language and routines based around 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 creates barriers to patient capacity building over extended healthcare within continuing care models. 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.” Untitled

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, in much the same way that patient partners assist in health research. 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 use their peer experience to extend professional care. This is particularly common when working with marginalized populations such as addictions, poverty, mental health 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 from a PWLE perspective in their own voice.

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.

4. 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 to fit into the roles and responsibilities professionals hope to re establish. Physical rehabilitation (physio, occupational 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 has created a major psychosocial or rehabilitation response to support survivors. This is significant because this response occurs simultaneously within the medical system (https://www.tandfonline.com/doi/full/10.1080/02813430802295610) and within community services (www.wellspring.ca). 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 (www.wellspringcalgary.ca) are more aligned with the next two subsystems, community inclusion and peer support. The main difference is funding and costs because formal programs cost more and are government funded while community supports rely on fundraising but are less expensive.

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.

5. 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 1950’s. 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.

However, 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 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; in employment options, living together, and integrated social and recreation supports. Adults in disability specific programs find companionship, peer support and accomplishment. The staff see themselves as allies in achieving integration and providing support when obstacles arise.

Even in healthcare, there is a growing movement to include integrated schools, workplaces, and leisure that reduce the stigma and isolation of PWLE. The range of assistive and communication devices related to mobility, with employment and living at home are employed will be early achievements in this fourth technology age. As the burden of illness and disability is reduced through early intervention and medical adaptations we see dramatic extension of productive life years for everyone so that the tenor of community inclusion and support will shift as former clients become employees to meet the projected employment gaps. It is about realigning health as civic responsibility.

6. 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, main street 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 to the familiarity of local situations. 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, emancipation and equity. It is here 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, the following link has an excellent description of Justice, Diversity, Equity and Inclusion (JEDI/DEI) in organizations, systems and society. https://dei.extension.org/ There are also JEDI guidelines in most universities and health care 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 why this last site is essential

Equity is 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.

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 persons with lived experience. 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 6 patients who met in an institution to share stories to find new ways to deal with the challenges of discharge. They knew that they needed to find shelter and work and relationships and ways to handle the inevitable relapses (www.uphouse.org). Today it still is a social enterprise (https://clubhouse-intl.org/what-we-do/overview/) which has created an alternative to psychosocial rehabilitation clinics and programs. The success of Clubhouse has replaced psychosocial and community inclusion mental health supports 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 memberships which enabled the hiring of staff who were not peers.

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 as part of the ThedaCare community innovations, "Voices of Men" is performed 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. (http://www.voicesofmen.org)

A social movement called The Phoenix is a national network of volunteer-led programming battling isolation by 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. (https://www.ashoka.org/en-ca/fellow/scott-strode)

Disability and Mental Health, Aging and Indigenous studies were the first health related groups to evolve through the above continuum from conventional health care, psychosocial and community inclusion. They were also the first to move toward peer support and membership based supports. It is no longer an issue of ‘fitting in’ but the ‘right to belong’. If we focus on fitting in, the focus 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 align with this ecology are based on JEDI principles and the study of systemic discrimination. Ashoka changemaking is also a major contributor to this space, using academic resources to work with communities to codesign 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 health care, curation of health records, and managing personal health care.

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 called 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 Senior’s health care from a systems perspective

Understanding my health concerns through Science informed healthcare

Geriatrics is informed by aging science as the biomedical treatment of conditions related to aging. It is the practice of biological decline, with treatment being informed by biological markers. Research in this area, 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 degree of loss.

Recovering: Psychosocial or Gerontological health care 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: Aging studies is a relatively new field. This emerging field of study is related to healthy aging and was the foundation for the Grey Matters (2010) 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 Studies 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 most 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 among 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.

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

My right to belong: Seniors advocacy, action groups, and peer support 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 (2010) research on resilience demonstrates a different systemic approach.

It is now easier to identify problems faced by patients and persons with live experience 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 health care. 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, 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 health care 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 .

Understanding 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, curious, self help, receptive and affectionate. 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 wholefood 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

7. Analysis of Systems from a patient perspective

This last section considers two separate ways to understand the experience and expertise of patients within health systems. This is part of the design thinking categories of empathy and engagement, identifying and explaining systems blockages, and understanding patient experience.

Crowdsourcing

As we move to citizen science and online research options, crowdsourcing is able to reach many populations related to specific health systems. In this, the first round of research might include the request to identify the health systems or services your population might use and these could be plotted on a system template as in this chapter. The template 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, 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 group to conduct more detailed research.

Narrative analysis

The first option is already part of peer research, it is the use of narrative methods to solicit stories of personal experiences in health systems and research to explain the blockages in these systems from a patient perspective. In the last chapter we 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: online and in person consulting patients, resources, community gatherings, literature. These consultations result in a number of concerns identified by patients, professionals, community resources that are taken to a SET co design team to prioritizes the concerns.

• 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 understanding the blocks in the system and patient experience they concluded that it was important for patients to find their own way to develop a healthy relationship with food. The system needs to explain this to patients after diagnosis and to provide resources for how patients managed 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 that 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 the surgery preparation that was 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, (Jean Baker Miller Relational-Cultural Theory: Fostering Healthy Coexistence Through a Relational Lens | Beyond Intractability)

Discourse analysis which 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 that can be done by students or peer researchers.

• Who is the author and what is her relationship to the reader or the patient? For example what authority or power is in play:
• expert, colleague, victim, allie/advocate, scientist, professional, program director
• Language cues that identify power imbalances.
  • Pronouns: Who is the I, the she, the we, to 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, making progress or are the verbs a sign of being acted upon.
  • General tone of language: expert language using professional language, colloquial or collective language, inspirational, goal focused
• 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 is an attempt to raise awareness of this confluence of change and to shout out the power and the necessity of peer research during this escalating pace of change. This chapter looked at health systems from a patient perspective to uncover obstacles within the current system.

More importantly 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. That made it possible to consider the forces of innovation and how they relate to a patient and community view of health and health equity. 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.

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 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 has agreed to share her work that will be included in each of the chapters in this section.

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 health care professionals from fulfilling their duties while revealing the elements of the 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.

Findings

In the deficit-based diagnosis and treatment system the patient is passive and responsible for changing their world view 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 health care providers to understand health holistically. Health care 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.