1.1 A Personal Narrative of Social Innovations in Health
The secret of change is to focus all of your energy, not on fighting the old, but on building the new.
—ascribed to Socrates
- Evolution of system from behavior control of patients in psychiatric institutions to patients as peer researchers and social entrepreneurs
- Personal research narrative of innovation within health systems and the ability of systems to resist change
- The promise of Community, Self-help, New Social Movements and Social Enterprise health options
- The importance of new research roles for persons with lived expertise during innovation and change with the fourth industrial digital revolution
Social Innovation and Paradigm Shifts
In recent article updating social innovation, Mason, 2015 considers how social innovation is manifest as part of health promotion ( (PDF) Social innovation for the promotion of health equity ). This classification has been adapted to describe the stages of the personal narrative to follow.
- Service-related social innovations such as new roles, relationships, new social organizations and institutions along with an innovative government policy. This, by definition, relates to systems, their rise and increasing challenges. We add a separate category of service related social innovations.
- Community based social innovations that challenged the authority of institutions in ways that recognized the rights of those not generally included in existing systems.
- New Social movements—or networks such as the Black Lives Matter, patients international, and the modern hospice movements that were led by those who had recognized and challenged the authority of existing systems.
- Innovative forms of social enterprise that emerged as capitalism became enmeshed in new forms of social innovation. Academic researchers sought ways to turn research advances into commercial products for health and education systems. With this came the realization that business models could meet social needs. Ashoka Network of university changemakers has captured this energy (Social Entrepreneurship). This also includes social innovation that operate as social enterprises from a not-for-profit base.
- Digital social innovations in which innovators, users and communities collaborate by using digital technologies to co-create knowledge and solutions for a wide range of social needs at a scale that was unimaginable before the rise of the Internet (Bria et al., 2014). These digital social innovations have arisen because of the third industrial computing and communication revolution. The paradigm/ industrial revolution associated with this is growing due to the ability to combine digital, physical and biological technology (Growing a Digital Social Innovation Ecosystem for Europe)
Mason’s categories of social innovations provide the structure of the chapter: institutional systems, community service innovation, self-help and consumer social movements as well as social enterprise. Also included is an introduction to the current emerging paradigm shift related to digital social innovations.
Personal Experience with Social Innovation
I was born just after the second world war as societies struggled to recover from the challenges of two world wars, a pandemic, and global economic depression by creating social institutions that reflected industrial and military systems. By the 1960s, during my university years, these social institutions or systems were already being challenged by the feminist and civil rights movements. I was part of the early feminist and civil rights movements in North American and Europe. I marched, burned feminist apparel, and became aware that I too was discriminated against within systems because of a disability. In graduate school I worked with early computer and communication technologies. I learned strange computer languages and early programming with large and cumbersome computers. I eagerly spent my first paycheques on the first Mac 124.
From early experience with social innovation within psychiatric institutions in Ontario, I moved to Alberta. I worked as a contract researcher to government departments, as a program evaluator of community based health systems including home programs for severely handicapped babies to long term care, and policy research for guardianship, Adaptive Aids and Assured Income for the Severely Handicapped (AISH). I was hired to help develop a university institute for innovative vocational and rehabilitation research and from there I moved to the University of Calgary to develop a disability studies program (Community Rehabilitation and Disability Studies, CRDS) within the faculty of education based on social justice and community inclusion.
Universities at that time were adopting a military internet communication platform and I was developing distance programs for our new undergraduate and graduate degrees. I eagerly jumped at the chance to create distance online options to reduce travel. This was followed closely by a large community grant to create a Canadian digital presence for persons with disabilities using the internet. This seemed logical because so many communication devices were developed and used extensively by persons with disabilities. The Dinsdale Centre for the Empowerment of Canadians with Disabilities bravely attempted to navigate the early internet but costs were beyond the scope of universities when eager disabled people took advantage of this new access to people and ideas. Within the university, education and other graduate programs in business, environmental design and social work banded together to support early online curriculum development and delivery, especially how to supervise practice at a distance. Because of this we were able to secure early funding to create laddered degree programs with colleges across Canada and a blended master of science degree in disability studies.
When the program moved from Education to Medicine, I had the chance to use internet resources to support an experiential EDI (Equity Diversity and Inclusion) program that supported community experience led by mentors with lived health experience in the six target marginalized populations that were part of the Canadian medical curriculum. Six groups of first year medical students were involved in a dramatic change in roles as medical students were guided by mentors who were homeless, disabled, Indigenous or considered to be mentally ill, and refugees. A third of the students felt that they were deeply impacted by their experience, a third were insulted by being taught by people without academic credentials and the rest seemed to think it was not important or made them uncomfortable. I retreated rapidly and humbly to study how to open dialogue between people with lived experience (PWLE) and medical professionals. This motivated a series of studies to create a patient research voice that would break through the glass ceiling that existed for patients in healthcare.
Social Innovation Impact and Paradigm Shifts
Social Innovation and Social Enterprise are recent extensions of the term innovation that had come to be associated products, services and processes that were marketable. Definitions of social innovation were developed to identify new ideas that resolve existing social, cultural, economic and environmental challenges for the benefit of people and the planet. A social innovation is a personal, social and systems change that alters the perceptions, behaviours and structures of individuals, groups and societies. Even more simply, a social innovation is an idea that works to improve the public good. (Centre for Social Innovation, 2008). A more recent definition ‘change in social relations, involving new ways of doing, organising and/or knowing’ (A Framework for Transformative Social Innovation) has been adopted within current theory related to Narratives of Change and aligns with Conger’s definition from 1974 is adapted to reflect the current scope of social innovation: New ideas, processes, products, policies and organizations that change the way people see themselves and relate to each other. This implies a focus on changing roles, relationships and structures within existing systems and as they transition in response to societal values innovation.
The following table introduces the general evolution of systems addressed in the chapter. It identifies how the roles of patients, professionals and the systems became constricted as systems became inflexible and more powerful with government funding, bureaucratization and specialization, professionalization of care and finally the medicalization of deviance. The power of current healthcare systems are protected by science and the promise of cure that make the system resistant to change. The following table provides an overview of reactions to the growth of health systems through the negative impacts, current advances and anticipated futures. These are summarized through the experiences of patients, professionals, and the health care systems.
Systematization of health
Growth in government funding and control
People with lived experience
Loss of control and identity, dependence on professionals
Loss of connection, effectiveness, depersonalization, meaning
Rising costs, increasing expectations, justification of reduced accessibility increases Systemic discrimination
People with lived experience
Peer support, advising health teams and decision making
Health care partnerships, more community engagement of health professionals
Increased patient choice and responsibility, partnerships in care and research, technology advances in individualized solutions.
People with lived experience
Increased engagement in personal health and health care with technology
Shifting roles to support technological change. Working for patients (individualized funding)
Reduced burden of disease for Non communicable and stress related disease,
More focus on health of communities.
Bureaucratization and specialization
Professionalization of health care
Medicalization of deviance used as access to care
Systemic discrimination challenges
Figure 1: Social change in health and health care
Narratives of Social Innovation
As I was choosing system examples of health and health care within the above summary of, I kept returning to my personal research journey. These experiences acted as case studies of systems, roles and relationships and the narratives form a foundation for social change and innovation that impacted the roles of patients and their relationships within health-related systems. They also introduce the basic guiding theoretical frameworks such as social construction, critical theory, role and systems theory that will be used to provide an analytic framework throughout the book.
1. Institutional Service Social Innovations.
Healthcare related institutions for people living with mental illness, developmental disabilities and wasting diseases began as hospitals and congregate environments claimed to help patients recover and learn how to exist in society. They soon became long term institutions based on military, corporate and industrial systems because there were few ways to return to society and thus institutions grew rapidly as society came to accept the possibility of removing disruptive or uncomfortable elements from society (History of Psychiatric Hospitals, Nursing, History, and Health Care. Penn Nursing).
By the 1960s, deinstitutionalization was supported by the promise of cost savings and political pressures to deinstitutionalize. New medications were ‘on the horizon’ to reverse the mental illness and enable patients to manage on their own. This did not take into account the devastation that had been caused by long term psychiatric institutionalization that severed family connections, reinforced compliance and refuge from stigma. These patients became a throw away generation, living in boarding houses or on the streets in large cities. These people who had no voice in institutions continued to have no say in the subsequent decisions that were made about their lives.
Token Economies Change Behaviour
The following research story captures a moment at the very beginnings of deinstitutionalization. The social innovation was a research projects using behaviour management through reinforcements to improve patient behaviors. It fueled the optimistic belief that even the most difficult of patients could become more acceptable by introducing behaviour modification techniques. The system chosen was a large custodial ward/unit for ‘aggressive and regressed females with an average length of hospitalization of 19 years’. The following is a summary of notes taken.
Very early in the morning, I got on a bus dressed as a young professional and got off at Lakeshore psychiatric hospital. I quickly changed into a ‘house dress’ and transformed into a quiet regressed patient on a unit for aggressive, regressed mentally ill women. I slipped into place as the residents were being showered and dressed. I was ready to record patient behavior as a research intern on one of the first behaviour management token economy projects in Canada. Patients were given coloured poker chips for daily routines and behaviours and were taught to use the tokens to gain access to the dining room and the small tuck shop. I couldn’t resist making small notes on the side of the data sheet: the cluster of nurses worrying about withholding meals when patients didn’t earn tokens, the black market in tokens, how dominant patients took tokens as protection money and how I was so easily treated as a patient.
Patients over time easily adapted to making their bed, washing their hands, responding and dressing themselves in order to pay for their meals and their daily treats. When the tokens were no longer part of the research, they were absorbed into the control strategies or were no longer of use. Like most token economies the original behaviour patterns slowly returned. The power of the research to change behaviour was demonstrated, published and led to other token economies and behaviour management programs as the patients were moved from institutions. The notes I made and the reflective notes I made each night on the bus turned out to be my entry into a world of health culture.
This ethnographic view of systems, institutional roles and relationships encouraged me to look at research from a patient perspective. Patients fit into the routine of the ward in order to avoid punishment or removal of privileges. The relationships among patients were covert and based on physical and psychological hierarchies, their relationships with staff a vigilant compliance. These women became my ground zero, people who had no voice, made decisions to obey or refuse to obey based on the level of threat.
The social innovation of a token economy was a psychological tool, developed originally using rats and dogs. The goal was to prove that reinforcement could increase positive behaviours of self-care (hygiene, eating, communication). While the token economy worked, the impact, as with most systems using external reinforcement, lasted as long as the reinforcement continued and the transfer of the reinforcement tools to staff (Operant Behaviour Modification Techniques Applied to a Ward of Severely Regressed and Aggressive Patients).
This example suggests the ease of creating and enforcing control through external positive and negative reinforcements. In this case the punishment used in most institutions for severe mental health or disability was temporarily replaced by positive reinforcement. In effect it demonstrates the power of closed systems to maintain compliance.
My fascination with ward culture was noticed and I was sent to a psychiatric milieu rehabilitation course at Boston University to learn how to create positive environments within institutional settings. I was able to set up in-house ‘research projects’ when I returned to look at ways to prepare patients and staff for deinstitutionalization.
Assessments change ward culture and roles
My next service innovation was based on the use of the Medfield Rehabilitation Checklist (no reference available) to test if a positive, asset based assessment would increase the positive culture of a psychiatric ward. The checklist was introduced in a women’s ward without any motivators or reinforcements. The Psychotic Reaction Profile (Lorr, 1960, psycnet.apa.org ), a checklist of deviant and psychotic behaviours, was introduced to a comparable ward. The staff on each ward assessed the patients once a month and reported on their clients in a staff meeting.
The impact of this simple service innovation was remarkable. Within three months, the staff using the Medfield checklist were more positive, interacted with patients and patients interacted more with other patients, they went out of the institution into the community and family visits increased. On the control ward, staff that used the psychotic reaction profile reported more deviant behaviours but the culture of the ward remained basically the same. One might surmise that the checklist changed the focus and expectations and role of the staff on the first ward which provided opportunities to interact positively with their patients. This in turn encouraged them to expect more positive activities and behaviours of their patients.
This informal research demonstrated the effectiveness of checklists of patient behavior that focus staff attention. In this case, the introduction of a competency checklist shifted the environment from a deficit base to an asset base. The role of staff shifted from one of control of negative behaviours to the encouragement of positive roles. As a result patients were considered able to try new activities and capable of being in the community with other patients without staff being present.
The use of positive behaviour checklists to reinforce competency based behaviour is an effective service based social innovation in that it was a psychological change in expectation that changed the way both staff and patients saw themselves and interacted with each other.
Introducing work culture in a psychiatric hospital
The success of this short program based innovation led to a second project to create a new culture within the hospital that was intended to improve the work capacity of patients in preparation for deinstitutionalization. This might have also been considered a new social movement as it coincided with the development of options for adults with developmental disabilities that supported inclusion in society through work, leisure, housing and education.
The institutional leadership were buoyed by the success of the impact that an asset based assessment had on patient behaviour and it was decided to create a workshop to employ patients in a realistic work environment within the hospital to further test the impact of an asset based approach (newspaper article, in appendix). We hired a foreman with business experience and he interviewed and hired patients that were paid according to their work (piece work). Workers were promoted or fired based on their productivity and were placed in community work sites when they were ready.
As the concept expanded, other wards started their own workshops and vocational case reviews were started to plan for discharge into employment options. It wasn’t long before community and family members joined the meetings and patients were speaking for themselves and the jobs they hoped to find. They had found a voice. However, that voice challenged the culture of psychiatric treatment reviews and planning and psychiatrists took over the vocational case reviews. The meetings that were focused on employment were soon incorporated into the regular case conferences. As professionals took over the running of the program, the culture of work returned to a more comfortable culture of occupational therapy.
I learned about institutional systems and culture and the subtle but powerful forces in play when changes to roles and expectations are proposed. Patients in psychiatric hospitals had almost no voice in the decisions that defined who they were. However, the research had demonstrated that changing culture to encourage normal behaviour and interactions could be effective. Patients had become more socially connected and the introduction of work environments created space for new collective identities as friends and co-workers that were very different from their former dominant patient roles. While the initial impact was positive for patients it challenged professional relationships in the institution. One of the harsher learnings related to a young woman who was ready for discharge and had secured a new position. After a supper with her mother and myself she jumped from the apartment balcony. The hospital medical director confirmed that the cost of success can outweigh the safety of refuge - a lesson that motivates me to challenge congregate care proposals to this day.
Looking forward to current options, the success of this innovation was possible because it was, in fact, a social enterprise with the money raised from contracts providing the incentive pay for the workers.
2. Community Alternatives as Service Related Social Innovations
The deinstitutionalization of persons with cognitive delays proved to be a very different story. It was supported by emancipatory social theory called normalization and an active parent movement that led to early and sustainable success.
Normalization, an emancipatory social theory was perhaps most dramatically articulated by Wolfensberger ("The Principle of Normalization In Human Services" by Wolf P. Wolfensberger, Bengt Nirje et al. ) and its more recent iteration, Social Role Valorization (Wolf Wolfensberger Lecture: The Dilemma of Doing Human Services for Pay). He spoke about the rights of developmentally disabled persons to be valued and included in their communities. It was developed in the 1970s alongside feminism and civil rights movements that sought equity, diversity and inclusion (EDI). This movement led to other emancipatory movements in education, vocational rehabilitation and community inclusion for seniors and disabled people. Here we focus on the capacity of families and communities to become social innovators of new roles and relationships outside of healthcare systems.
Parent Advocacy for Children Living with Developmental Delays
The parents movement of the 60s and 70s created parent support groups, political advocacy and specialized schools, day programs and workshops. These families created space for their children in society. When those living with cognitive disabilities were discharged, they therefore came to a very different reality. As institutions faded, parent movements grew in power, asserting rights to community inclusion and peer support. The parent’s movements had effectively challenged institutionalization and provided alternative community options for families, children’s education and work. Vecova then called the Vocational and Rehabilitation Research Institute, at the University of Calgary, was one of the 10 Centennial projects in Canada that garnered political support in the face of deinstitutionalization. A similar process was initiated in the USA with the Kennedy foundation support for university resources to research and support the growing parent movements.
This was a dramatic shift in the roles of developmentally disabled children and adults. They shifted from patient and deficit roles to become children and adults living with their families with opportunities to learn and contribute to society. The families ignored the roles assigned to their children by medical professionals and created new space for social innovation within communities.
Community Capacity Building for Disabled Adults
Because of my experience setting up and researching vocational programs, I was hired as part of the startup team at Vecova to create a culture of capacity from the ground up through research informed innovation.
We began by testing the previous success of asset based assessments that might raise expectations of staff and trainees to create normalized vocational, living and community integration. The assessment process, called the Adaptive Functioning Index (AFI in RESOURCE) was created with potential employers, young adults living on their own, trainees of Vecova and staff. We adopted trainee language to ensure that the assessment was in their voice.
As part of the research and staff training, it was decided to include trainees in their own assessments to set their own goals. When trainees became involved they were motivated to achieve the goals they set. It was indeed possible to create a culture that challenged the dominant discourse of deficit and incapacity among developmentally handicapped adults. The placement success far exceeded our expectations and the asset based culture of capacity and inclusion continues to this day.
As the AFI was sold and used throughout North America and Britain, staff in other programs were reluctant to give up their coveted expert roles as assessors and goal setters. The AFI also came to the attention of funders who saw it as an ideal way of assessing funding needs based on the deficit model that the lowest scores received the most funding. In places where this was done, the more handicapped trainees received the most funding. It didn’t take long for vocational training to return to maximizing funding, which reduced the asset based focus on building capacity.
We learned that emancipatory changes in roles and relationships can be profound and lasting when the system is designed to empower those using the service. We also learned that it is difficult to change established staff roles unless they believe that those they work with can and should gain more control over their lives. Political funding trumps innovation.
Examples of translating social innovation to other systems.
Medical institution for the profoundly handicapped children
I was hired in the 1980’s to deinstitutionalize a small institution for severely disabled children in Calgary because of the AFI success at Vecova. We began with a research project to create an assessment for dependent handicapped children to guide staff in creating a family culture with positive expectations for change. This became a social innovation to change attendant roles to parent roles for staff. The family environment within the institution was considered part of the social movement of normalization. As an aside, Wolfensberger, on a tour of the family groups, called for a fire to burn the institution down.
While we were successful in mobilizing and motivating the children and energizing the staff, it collided with a government policy to decentralize government services by building small institutions in rural towns to increase rural employment options. Our research demonstrating that these children could learn and take advantage of an asset based model was stopped because it conflicted with their belief that severely handicapped young patients could benefit from being in a small town. However, when the political winds changed, a homelike setting with a family model was created on a portion of land and the large institution was demolished. The staff family sent their children to school and day programs.
School curriculum for severely handicapped children
The success of the assessment in creating family learning environments with the very handicapped children, opened the door to the school system because we showed that these children could learn. I became the chair of a research team developing a novel provincial curriculum for dependent handicapped children that laid out expectations for the new students, classrooms and teachers based on the research to develop an assessment for dependent handicapped children. This work led me to develop and teach of a specialization in special education for profoundly handicapped children through the University of Calgary to prepare teachers for this new venture. The curriculum was optimistic and hopeful, new teachers expected children to learn and created opportunities for new activities and learning and this led to a more advanced curriculum. This created a belief that all children could learn and this changed the views of the education system. I
The above community experiences, working in partnership with staff and those most impacted, demonstrated that lasting change could be fostered when people invest in asset based research to raise expectations and provide opportunities for growth. This is an action base cycle, as staff expected growth, children (patients) grew and changed, which in turn influenced staff to try harder. We see this when units for those with Alzheimers are supported in community environments, doing their daily chores, interacting with each other and learning new skills. Community programs are now expected to be inclusive and natural with adaptations being made to support children, adults, and seniors to be in charge of their choices and their lives. It is slowly becoming more expected within health care settings.
To jump to the future, home healthcare developed in the last century to enable seniors with chronic care to age in place with support. These values are currently being challenged as a wave of seniors are challenging the way personal support staff are being replaced by standardized care protocols using professional insing more telehealth and digital health supports.
3. New Social Movements and Consumer Led Services
By the 1970s and 80s, the success of Alcoholics Anonymous’ twelve step programs prompted spontaneous self help groups where citizen groups informally shared stories and ideas about how to cope with everyday life outside of formal healthcare. These natural relationships heralded the emergence of a collective patient identity outside of sanctioned health services and facilities. Social support and experiential knowledge became recognized as important assets for health and wellbeing. Spontaneous self help meant that groups arose when needed and stopped when the members created more natural friendships. Some self help groups were encouraged to become agencies with funding provided by governments and the United Way. Other health related peer support groups were renamed and reclaimed under the banner of medical psychosocial support (Embodied health movements: new approaches to social movements in health )
More importantly, these early self-help groups and disability agencies provided the impetus for ‘consumer advocacy and consumer led services’. This energy built on the pioneering work disability organizations began after the world wars and disabled citizens, patients and family members came together to speak for themselves and for others like them. Organizations such as Inclusion Canada, Canadian Association of the Deaf the Council for Citizens with Disabilities (Council of Canadians with Disabilities: Home) and the International Advocacy group, Disabled People’s International were early new social movements in health. Their actions led first to fundraising for community services and research and eventually to political action.
During this time, the University of Calgary was initiating an interdisciplinary program (Education, Social Work, Kinesiology, Nursing, Continuing Education and Medicine) of research and career development to prepare staff to work with persons with disabilities, mental health concerns and chronic illnesses within community settings and organizations. This program, Community Rehabilitation and Disability Studies today located within the Cumming School of Medicine.
Faculty members have been deeply engaged in new social movements to build capacity of people with lived experience (PWLE) and families to advocate for community based support, full inclusion in society and social policy changes. Community Rehabilitation and Disability Studies (CRDS) foundations in emancipatory social science and critical theory changed how I understood social change. My experience with PWLE and communities convinced me that that meaning is created by groups of people who are trying to explain and make sense of their shared experiences. This meant that PWLE, embedded with their friends and communities, were essential to research through real life data and the shared meaning and identity that could anticipate and activate change. Because meaning was created, it meant that these social constructions created by health systems could be challenged by citizens and changed. Our work as faculty began with social justice and soon adopted the call to challenge and change systems that marginalize through systemic discrimination. The natural outcome was to become involved in social innovation with marginalized groups.
Link to RESOURCE Documents: Calgary Association of Independent Living (CAIL) : Community peer support program by with and for persons with disabilities (these are in Calgary)
The Canadian Coalition of the Disabled (CCD) recognized the need for peer support and information resources in addition to their efforts in human rights and political action. They developed the Canadian Association of Independent Living Centres, now called Independent Living Canada which fostered emancipatory goals of peer support. This included providing spaces for persons with disabilities to come together to share their stories and support each other. The aim was to empower disabled citizens to seek and direct the services they needed and to provide opportunities to help others in their struggle to become respected contributing citizens.
This emancipatory innovation in peer support represented a new social movement founded in peer support. The Calgary Association of Independent Living (CAIL) welcomed persons with all disabilities, including those who had been institutionalized for many years. Together they shared stories and built peer support and independent decision making about their futures. The director, a graduate of the University of Calgary graduate diploma program, set out to design a consumer led service that reflected the slogan of the disability rights movement: ‘nothing about us without us’. The Centre had a strong research foundation (RESOURCE link book and articles) and was able to demonstrate the impact of a consumer led model. The director became an independent service broker that supported members, along with their family and a personal support network, to negotiate an individual service plan that would finance the support services needed to live independently, at any level of disability. Service brokerage model had a strong clinical and research advisory team and produced a number of research projects.
CAIL had created a culture of acceptance and service run by consumers. The clients identified what they needed and were part of creating the way to meet their needs. This was my first example of a dramatic reversal in roles and relationships. Members who had brokerage contracts were employers of their care providers, they were in fact social entrepreneurs. They hired, trained, instructed and paid their personal staff. Their staff may have been shocked by the reversal, but soon came to understand the importance of personal control of care. While individual funding and service brokerage have become accepted for persons with physical disabilities the following example depicts the impact of these changes in role for those who have multiple cognitive and behavioural disabilities, and persons with limited motor and speech.
LB needed more support than was possible in community services. Through independent service brokerage, he was the first recipient in Canada of direct payment. With these funds a Joshua committee of parents and friends assisted him to hire and monitor his care providers for both residential and community individualized support. He lived in his own apartment with support and was able to attend community activities with support. The difficult behaviours disappeared and his direct payment decreased and stabilized at a much lower level.
A young mother in the later stages of MS with only head movement, living in an auxiliary hospital, desperately wanted to leave the hospital and live independently. She requested the services of the CAIL service broker despite the advice of the medical staff. She left after services she required to live independently were costed and funded by the government. An apartment was adapted and she hired all her staff. She lived many years with natural support, making her own decisions and helping others.
Twenty eight people were supported using this model, from children to seniors, those long term care, institutions, behaviour management programs and community organizations that could no longer provide service
RESOURCE: Marlett, MacLean, 1988, A new lifestyle for persons with severe disabilities: supported independence, available in RESOURCE: Alternative-Futures-Education-Students-Disabilities
New roles changed the way people saw themselves and related to each other. The small organization, run on a shoe string, captured the power of the early feminist and civil rights movements, albeit in a local and confined manner. It ignited the flame of emancipatory science while challenging my professional view that programs and professionals provided the path to empowerment. Service Brokerage philosophy underlies many of the current moves to assured incomes for persons with disabilities that turn clients into social entrepreneurs and purchasers of community services in stark contrast to the dependence of patients still within the current healthcare system.
4. Social enterprise through emancipatory peer research
The following diagram presents an overview of the focus and findings of the three studies: My thesis with seven social innovators to test the viability of co research: Grey Matters (2010), a peer research curriculum with seniors researching seniors about resilience: and, a narrative of twin innovations to teach patients peer research as part of healthcare transformation as part of PaCER.
It outlines the contributions and strengths of each of the three main research projects that informed the science of engagement in health research through peer and community research.
Give / Get negotiating
All day workshop
Iterative narrative methodology
Semi-structured and closed
Narrative peer group
Basic interviewing skills
SET COLLECT REFLECT OPTIONS
Story as category and theory
Data Management & Analysis
Classical Grounded Theory
Analysis for each method
Engagement & CGT
Common analysis of stories
Contextual theory as root metaphor
CGT writing group
Interpretations as Theory
Explanations of problems as theory
Figure 2: Evolution of Peer research methods
Each research project above begins with an introduction to the systemic discrimination or the need for innovation. Each considers how roles, relationships and social organizations were impacted through social innovation.
Case studies of co research in new social movements
My PhD consisted of 6 case studies of new social movements that changed the way people saw themselves and related to others through new social organizations and movements (Conger, 2009). Classical Grounded theory was chosen as a research methodology because it was suited to the study of innovation (RESOURCE A summary of the case studies as part of this book: In Calgary ).
The following are narratives of social innovation that impacted the roles, relationships and new social innovations/enterprises they founded. The feasibility of co research or peer research was tested in partnership with a series of content experts in the search for social change or civil rights for those on the margins of the systems they relied on. These partners were both PWLE and content experts. Gerry Kinsella was a PWLE social entrepreneur and the methods we identified were tested by Dorothy Birtles, a volunteer advocate for political prisoners being tortured, who created a social organization of volunteers sponsored by the Quakers. The resulting methods were refined and then tested with Cicely Saunders, a powerful health professional challenging health system practice through science and new social organization for those dying. These strategies were, in turn, tested with David Brandon, a radical provocateur and innovator trying to encourage political change. The final testing included Henry Enns, working at international levels to challenge systemic discrimination and Henry Three Sons, an Indigenous innovator fighting for Indigenous rights for children and families impacted by the 60’s scoop, by establishing Indigenous child welfare.
Gerry, the director of the Greenbank projects in Liverpool England saw the need to challenge systemic discrimination of disabled people as they left school. He created a number of social enterprises, most of them related to new adaptive technologies for work and sports (competitive wheelchairs) and new roles in training and business (wholefood restaurant and business). These businesses provided the income to allow Greenbank to challenge medical systems and reinforce emancipatory roles for PWLE. Greenbank College taught employment skills, created employment options and support services that competed with existing professional services.
Greenbank disrupts traditional health systems for disabled people through challenging and changing the traditional dependent roles of disabled patients by expecting people to make their own decisions. New social organizations of Greenbank reinforce a ‘give it a go’ atmosphere that validates risk-taking. Staff are disabled and students who are finishing the training act as role models. Greenback is considered one of the first social enterprises in the UK. He bypassed rehabilitation practices to work directly with commercial businesses in creating training modules and direct placement agreements
The new roles included: student, learner of main street technology based work skills, competent employee, mentor to new students and competent and independent employee. This is a long term successful social innovation and social enterprise (www.greenbank college.org.uk).
In later life Dorothy became the founder of the British Quaker Prisoner Befriending Scheme when a dream of torture turned into a personal Quaker mission and an unlikely social innovation. This innovation was a not for profit, volunteer run organization, supported by Quakers International. She studied the brutality of systemic persecution and torture and became the face of nonviolence and deep personal connection to prisioners when torture was practiced. Quakers became friends and through their letters and cards, let the prison staff know that the prisoner was not alone. At Christmas, in a cold and dirty cell, the strings of Christmas cards from around the world challenged the assumptions that prisoners were hopeless and alone. The social innovation was a deliberate, gentle and measured approach to convince repressive regimes to allow non-violent, Quaker connections. Within the minefield of international politics and tensions she found ways to counter the terrorism and systemic violence through oral traditions of sharing letters of everyday life.
The new roles included: prisoners were cherished and connected in their isolation and tortured existence; the Quaker Befrienders who used gentle means to advocate and stand up against brutality through sharing their letters with other Quakers and politicians; Dorothy became an activist and changemaker against terrorism from her quiet life and garden shed office.
Dame Cicely Saunders
She began as a Nightingale nurse, then an almoner or social worker and finally a physician and specialist in pain management. She was the founder of St. Christopher’s Hospice, a place where medical, social, personal and spiritual aspects of care combine to ensure that purpose and dignity are a natural part of dying. As an innovative social entrepreneur, Dame Cicely knew that if her vision took money from the health authorities it would not grow. She vowed not to compete with health systems and independently raised funds for this radical new model of health care until it became accepted. St. Christophers is a study of the use of professional power, spiritual values and entrepreneurial strategies that support new forms of caring for the dying that were later adopted by health systems. She was a powerful entrepreneurial presence and at the same time a story teller.
“You matter because of who you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”
—Dame Cicely Saunders, founder of the first modern hospice
The new social organization was an alternative medical practice that valued personal control and decision making, while removing the barriers to natural dying. As a social innovation, it challenged the systemic values and practices of isolation and removal of the dying person from active health care and without knowledgeable pain management or stimulation. The innovation was the vision of a hospice, in the original sense of a place of shelter, rest and care. Dying was an important phase of living with new roles for patients, families and staff.
Patients who had been disregarded because they were dying, were encouraged to take up new roles through journaling, preparing their life history for future generations and to make decisions about their dying. Families, overwhelmed by fear of pain and extreme care needs, had in-home support and the refuge of St. Christophers in the final days. Staff who were marginalized in medical institutions, gained credibility and value through the science of pain management and the success of Hospice.
David was an impassioned advocate for homeless people and for people with mental health and learning difficulties in the UK. His childhood was brutal and he lived as a mental health consumer, bringing a unique combination of personal experience and professional expertise to his work and study. David worked the streets, created fledgling consumer directed services and community development. He was a writer, teacher and academic. He was part of the deinstitutionalization and normalization movement but from the gaze of independent business.
One could say that he deconstructed the power of large service systems that ‘bullied defenceless people’ in the hope that if he exposed those in power they would adopt more humane practices. He saw his role as a changemaker using personal and volunteer resources as business capital.
He promoted new roles for people that were not defined by their condition but by their inherent worth. He saw systems and those who ran them as the enemy but he fought to bring them to his side. His legacy is great in the north of England and the memory of his quest for new ways of serving and living together has indeed changed service provision in the UK
Henry was a Canadian human rights activist who was part of the meteoric rise of Disabled People’s International (DPI), a grassroots emancipatory movement with strong international political alliances through WHO and national governments. His story captures many emancipatory themes: shared oppressions, coalitions and conflicts within consumer movement and debates about power. Henry developed rheumatoid arthritis as a teen and spent much time in hospital where he learned the power of using humour against those in power. He also used his Mennonite traditions of sharing personal stories as lessons for change.
He became an early convert to the Disability Rights movement in Canada and part of Canada’s team at the World Rehabilitation Congress in Winnipeg which led to the forming of the disruptive and innovative Disabled People’s International movement when the disabled delegation was denied power at the Congress. DPI acted as a social enterprise funded by national and international sources that supported the entrepreneurial drive to change national policy and restrictive government programs.
New roles for persons with disabilities were entrenched in the associations he helped create that spoke to the rights to full citizenship, political responsibility, international support for inclusion of persons with disabilities and the Independent Living Movement.
Henry Three Sons
Henry was the last case study. He avoided me for three years because he felt he was not an innovator or a changemaker. He was Blackfoot from the Siksika reserve in Alberta and an integral part of changing child welfare policy in response to what is called the 60’s Scoop. From the perspective of innovation, he brought the subtlety of working for change within a large, bureaucratic system while remaining fully part of his culture
The social innovation was the change of social work practice with children who were adopted by white families. He was a bridge between Elder support of traditional child rearing and the White child welfare system. The systemic threat was at crisis level - the future of Indigenous ways was in jeopardy.
Henry challenged the ontology of modern or western research that considers knowledge to be the result of individual thought and action. I had assumed that changemaking happened when a person challenged systemic problems and found innovative solutions. Henry considered that knowledge was the domain of the collective - the clan and the nation. Change happened when the collective moved in concert to combine Indigenous ways and innovative use of modern technology and new bridging roles.
The social innovation for me was a wake-up call. I had imposed my assumption of change on all the case studies. I was forced to return to basic assumptions and create a new contextualized way to understand truth and theory with each of the social innovators. I learned that social innovation needs to live within the traditions of each culture and community, it can’t be imposed from an academic platform.
His legacy is the Henry Three Sons, Child and Youth society. Advances included support for Indigenous parents to raise healthy children in Indigenous ways and an example of the strength of Indigenous culture as bridging between dominant and challenging ways of knowing, being and influencing.
The second research project was a Canadian Institutes of Health Research, catalyst grant to extend the impact of the co research thesis of new social movements, to adapt and test new methods for teaching seniors about peer research. It became an incubator of new teaching processes and curriculum and fostered new and adapted group research methods and strategies that extended the narrative methods and principles of engagement from the new social organizations study, above. This coalesced a curriculum that included fieldwork, questionnaires, group research and narrative interviewing that has become a product of peer research methods. The grant consisted of the following stages:
- A large co-design focus group process with over 100 seniors that identified the model for the research. We incorporated Mentors who were retired university researchers to lead each of 6 groups
- Active Learning based on Participant Action Research principles. This included a teaching session and practice with the mentor, conducting research with the partner site that had been chosen to best reflect each groups interests: culture, leisure, learning, health,
- Each of the methods and the teaching process was hotly debated and modified,
- A year-long shared writing process based using the same action cycle above. Strategies and methods were applied in natural settings as part of the writing process. For example, questionnaires were designed and administered with a seniors group who wanted to use peer research to design a housing alternative for local seniors
- A PhD seminar about resilience. Seniors from the training program and graduate students studying senior’s resilience collaborated to analyze findings from peer research interviews and to support student’s research proposals.
Grey Matters broke through many false expectations of seniors originating from geriatric and gerontological research that painted seniors as a burden. They felt they could challenge the dominant discourse of an aging Tsunami if they were able to conduct research themselves. The importance of grounded theory in early stage innovation and teaching constant comparison analysis was reinforced. The following diagram is the action teaching cycle developed for curriculum development. This has been used in the development of the PaCER courses and in other peer learning situations as a way to operationalize iterative cycles of learning and researching.
PAR-informed Inquiry-based Training
Seniors are natural researchers, they have learned to watch carefully, take note of powerful people and organizations and organize for action. Action research could take hold and make significant inroads on what professionals like to call the burden of aging. One wonders what would have happened during the early stages of COVID-19 if seniors had been included in experience research. The future in many ways will be led by today’s seniors. They do not want to be placed in institutions. They have the motivation and capacity to effect change that is led by seniors. COVID-19 did expose the frailty of the long term care institutions, let's hope that seniors will be part of the co design of new models of support this time.
It was apparent that seniors were adept peer researchers and could become a vital force in emerging collectives that are led by innovative seniors and visionary professionals. The power of their research was demonstrated when seniors applied to present their research anonymously and were accepted for the Canadian Gerontology conference.
Grey Matters was published and has been widely used as a guide for community research but when Kerby Centre of Excellence was cancelled because of their advocacy, there was no other champion to take up the opportunities to continue to train seniors and to conduct community research.
Shortly after Grey Matters was published in 2010 the director of the Kerby Center was replaced. The Centre of Excellence that was to be the champion of seniors as peer researchers was also closed and more traditional programming was initiated. In the months that followed, the lack of a champion to continue this exciting work was the greatest learning. Reviews of Grey Matters spoke to the potential of peer research but, without a champion to adopt the concept, the concepts became interesting reading and a course resource. Today there is an active international community of University of the Third Age along with the emergence of Aging Studies programs. With the pending second edition of Grey Matters, hopefully this social innovation may support peer research by seniors in the future.
Twin Innovations in health transformation: Strategic Clinical Networks™(SCNs) and Patient and Community Engagement Research (PaCER) as social enterprise.
I was invited, during the early stages of Canada’s Strategies for Patient Oriented Research created by the Canadian Institute of Health Research (CIHR) to add a patient engagement pillar to Alberta’s application process. A central tenet of this framework is that of patient engagement as “occurring when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge.” This provided an opportunity to explore the potential for patients to take on new roles in health research. The last section is a case study narrative about new roles for patients in health transformation that are in keeping with recent publications about Researching Health Together.
The following narrative of social Innovation is based on an article about PaCER and Alberta’s Strategic Clinical Networks™ written by the founding team: Tracy Wasylak, the administrative director of Alberta’s Strategic Clinical Networks, Dr. Deborah Marshall, a CIHR research chair and fellow of the O’Brien Institute of Public Health and myself, the originator of the research and training method.
Alberta, a province in Canada, created a comprehensive and single health system in 2008, and the Strategic Clinical Networks™ (SCNs) were formed as engines to drive this transformation. In the SCNs, those who deliver and receive care are equal partners in designing and implementing ways to reduce unwarranted geographic and cultural variation using evidence and research (11, 12). The SCN leaders knew that strong patient and community voices were essential when determining priorities and strategies for change and they were ready to implement radical systems changes to make this happen(13, 14)
When we started, patient advisors were already working on professional and research teams with early indications of increased patient-centered care, research uptake, and efficiency (6). We soon realized that we were well positioned to develop new roles, relationships and strategic partnerships because there was the political will to invest in training patients to create research informed patient advisors.
There are three distinct stories in this narrative of social innovation:
- ‘Emergence’ story uses the Grey Matters curriculum to teach patients to become members of the SCNs as patient researchers.
- Social Enterprise as ‘Survival’ provides an alternative way to continue the training after grant funding ceased. It introduces contract peer research partnership with the SCNs and Academic health researchers using a social enterprise model. Both stories were guided by research and independent evaluation.
- ‘Coming of age’ The third story captures the collaborative efforts to formalize training within the University of Calgary, create an administrative home, placement options and contract research with Alberta’s Strategies for Patient Oriented Research (abSPOR). During this time I continued to develop the science of engagement in health to support research teams and health systems to sponsor and support peer and community research.
This first story was informed by outcome mapping (reference) using grounded theory research as part of the catalyst grant from the Canadian Foundation of Health Improvement (CFHI). We used action based teaching to test the SET COLLECT REFLECT engagement strategy and the curriculum that emerged from Grey Matters. The grant funded two full year internships and graduates went on to work as patient research advisors with the Strategic Clinical Network (SCN) and national research teams. It soon became clear that the SCNs, as a receptive social innovation itself, were willing to form a disruptive relationship with patients as colleagues and to use PaCER research to inform and implement change. From previous experience, they knew that putting patients in the center of a disruptive transformation strategy without support and skills was a risk. PaCER training has helped to minimize these risks through rigorous training in conducting research that engaged patients and communities. These patients became not only advisors and researchers but the drivers for changing the culture in the SCNs and research teams. Also unexpected were the leadership roles patients took on and the emergence of their self-identity as change agents.
As our grant funding came to an end, the formal outcomes mapping evaluation and grounded theory research of the key stakeholders indicated that training had been successful in producing peer research and increased advisory capacity for the SCNs. We had created a strong partnership between health care, health research and patient engagement that sparked new ideas, challenges and opportunities in an environment committed to, and able to test new ideas. The lessons we had learned about the viability of the concept now faced the crucible of funding an infrastructure to continue the internship training and emerging peer research teams.
Survival: A Social Enterprise to support innovation
We moved quickly to create a social enterprise to support our training and scale up peer research. The income sources included training sponsorships and research contracts for peer research services. PaCER became a test case of social entrepreneurship and innovation within our university. We needed to create new employment, payment, ethics options, legal, financial, and accounting processes with university and AHS infrastructures. Developing and managing 16 internship teams over 7 years along with 24 research projects was complex without management support and we relied on part time communications and ethics support, a volunteer PaCER management team and the original founders team that co-ordinated university administration, research systems and the health system. After 5 years a community board and formal business were established - pacerinc.ca. We earned funds to support research teams and training sponsorships, but not the academic and administrative infrastructure.
As a social enterprise we learned that researchers were willing to ‘buy into’ a novel approach to engaging patients in research when they were satisfied that PaCER could manage and oversee the academic integrity and the cost was reasonable. Direct academic oversight, quality assurance, adherence to legal protocols and ongoing consultation with the university ethics review board ensured that PaCER was seen as a legitimate academic resource. The training and research methods were tested and adapted to ensure lay language and simplified robust methods. This had added benefits because the results were sound, practical and easily understood and implemented.
The main learning from this second story was the essential role of the SCNs as the champions of PaCER. Their mandate for evidence-based health change and the ability to implement innovation enabled patient research voices to be included in decisions and future planning. SCNs connected PaCER to other research and quality improvement opportunities, opportunities, a vehicle to spread innovation, and a continued support of training.
We moved from the rhetoric of ‘hearing from patients before research begins’ to engaging patients as full members of research teams throughout the research cycle. It was becoming more common to be asked to conduct research into troubling and resistant issues that require a deep understanding of how patients make decisions and what matters most to them.
Formalizing Social Enterprise and Expansion
We knew the next stage had to be expansion to respond to demand across the province and nationally. The transition was extremely rapid and as with rapid expansion we lost the capacity to plan, evaluate and adjust. We needed a predictable product because our expansion was high profile and risky. Expansion began with a bang with a large Indigenous contract that, for the first time, provided funds for project management. We partnered with the University Continuing Education unit to create online education and internships.
However, the politics of working with a large, new population of students throughout the province and lack of internet capacity, the rubric ‘go slow and adapt’ was swept away in rapid change in materials, staffing, demand, and basic processes. In the end it was successful because of the intense commitment of the staff, the board, the liaison committee, and particularly the Indigenous graduates. Unfortunately when the funding ceased, there was no way to fill in for the infrastructure and new models were needed to go forward. A partnership of the university, Alberta SCNs, The Alberta SPOR patient engagement unit and Continuing Education have committed to creating ongoing structures to ensure PaCER sustainability.
6. Digital Social Innovation in Health
The focus to this point has been on the science of engaging patients in qualitative health research as part of academic research and social innovations that support the evolution of patient roles in health and health care. At this point we pivot to apply the science of engagement to the policy, theory and methods that support partnerships between citizens, business models and professional roles in preparation for major shifts in health care. The advances in computing and connections of the third industrial revolution made information and research widely accessible and with that, Citizen Science (CS), Responsible Research and Innovation (RRI) policy and Social Innovation and Social Entrepreneurship grew rapidly. As the fourth digital revolution builds, the need to include patients and communities accelerates. We begin with a narrative about the players in the science of engagement as we build a bridge between academic research, social innovation and social enterprise.
We begin with the current Patient Oriented Research (POR) approach to patient engaged research that relies on Big Data from the third industrial revolution. Big Data relies on standardized input from health services and systems, costs and surveys of patient experience, outcomes and satisfaction measures of effectiveness. Recent SPOR goals are focusing on building capacity of patients and communities to be engaged throughout the research process (as in this science, particularly in chapter 2). As the pace of innovation increases, patients will need to become key stakeholders in producing real life data during system changes. It also requires that new research methods and patient’s trained in engaging patients and communities to be able to capture the unheard voices and priorities of marginalized populations and groups.
Feminist, gender, race, and disability studies programs that began in the 1970s, have come into focus challenging the focus on medicalization, deviance and deficit that underlie systemic discrimination in health systems. Critical thinking and emancipatory social science inform these growing spaces within medical faculties. They are also the flag bearers of Civil rights that declare the need for Justice, Equity, Diversity and Inclusion within universities, schools and government systems. In this final section we build links to a number of international initiatives that encourage new paradigms within health research, that can mobilize citizen and societal forces to deal with systemic and global health concerns.
The following examples represent established approaches that combine research and citizen and community participation. These are presented here as potential affiliates in a science of engagement as we experience changes in digital health. Each option includes links to articles that provide information about history, values and methods for health related participatory research. These examples appear throughout the book.
Participatory Action Research and Community Based Participatory research (CBPR)
Community Based Participatory Research (CBPR) was built on the principles and engagement strategies of Participant Action Research that recognized the history, culture, wisdom and expertise of communities and the use of research as education and action. Participatory Action Research (PAR) represents the foundation for EDI (Equity Diversity and Inclusion—Universities Canada) that informs this science of engagement. I was privileged to be asked to support PAR research in inner city communities and Indigenous communities and it formed the rationale for the three peer research projects above. CBPR has grown within health promotion and prevention research (links to CBPR for health, Wallerstein, 2017) that became embedded within the granting structures of universities and health systems. CBPR emerged in the past decades as an alternative research paradigm, which integrates education and social action to improve health and reduce health disparities.
While CBPR is based on community, most use academic decision making partnerships and granting structures that require academic expertise. This restricts the inductive nature of PAR, the ability for community ownership of priorities and outcomes. CBPR, while published in participatory health journals, has not reached the expected uptake in transforming health systems. With the shift to more focus on prevention and community resources, this will likely shift. The increase in social enterprise and community business models for health care also supports the principles and practices of CBPR.
The Wellesley Centre in Toronto and the HIV/ Aids community research that is spreading across Canada as part of the science of engagement but CBPR is important reading for those looking to engage communities in health research.
Links to introductory articles:
Wallerstein N, Duran B. Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health. 2010;100(S1):S40–6.
Citizen Science (CS)
When looking for other models similar to PaCER I found the work of Strusser’s team and the resurgence of Citizen Science in response to computing and communications technology advances that opened new opportunities and new research approaches
A search for CS online demonstrates how research that responds to serious social, climate and ecological problems can become integrated not only within communities but within schools and advocacy networks. Young people are learning about research and their role as citizen scientists.
CS has become synonymous with the democratization of science and creating academic/civic alliances to make a difference. Citizen Science shares much in common with action research in health and health promotion such as Participatory Action Research, Community Based Participatory Research and peer research. All focus on the activation of citizens and communities to improve design, data collection, interpretation and uptake of research. However, the more recent approaches include management, co design and overseeing citizen science projects by citizen scientists. ‘Extreme’ CS is identical to Peer research in that it is done by, with, and for, citizens.
Citizen science principles and goals are similar to those of Peer Research. The introduction of a science of engagement relates directly to CS in health. This includes: the need to increase the scope of recruitment in clinical trials, community based participatory research and health promotion. As CS increases in healthcare spaces, links between CS and Peer Research are likely to increase.
Citizen Health denotes the movement of heath and health care to community levels and reconsiders the existing health systems and funding options that move from fee for service to contract care for populations
Lea Den Broeder, Jeroen Devilee, Hans Van Oers, A Jantine Schuit, Annemarie Wagemakers, Citizen Science for public health, Health Promotion International, Volume 33, Issue 3, June 2018, Pages 505–514,
Responsible Research and Innovation (RRI)
Responsible Research and Innovation (RRI) is devoted to collaboration among key stakeholders in promoting innovation that supports social changes and systemic and economic challenges. It began in the European Union and is becoming a focus for many industrialized countries. RRI as an “on-going process of aligning research and innovation to the values, needs and expectations of society” (European Union. Rome Declaration on Responsible Research and Innovation in Europe; European Union: Brussels, Belgium, 2014.). It is a call for the inclusion of citizens and communities to be included in designing, carrying out, and implementing research that has strong social value, by being anticipatory, reflective, deliberative, and responsive to social needs.
RRI and the science of engagement align in many respects and as a force operating at policy levels. One would expect to see that the current research requirements for engagement will become more ingrained in grant design and implementation. RRI produced effective partnerships between civic, academic and government sectors. The role of patients in this initiative was not fully realized as the results of large consultations proved difficult to integrate into the structures
PaCER began as an incubator space during Catalyst funding (pilot funding) that enabled us to test ways to train patients and community members. This bubble allowed us to conduct grounded theory studies as we learned about patients becoming researchers (link to new roles for patients).
We became a social enterprise when the pilot funding ceased. Being a social enterprise meant that we could charge for research services which enabled us to design each research contract to address pressing patient experience problems that needed new approaches. We were able to evaluate results to improve both the rigor and usefulness of the methods and the management of research contracts within the infrastructure of the university.
Everyone is a Changemaker—Ashoka
The following is on the banner of the Ashoka Website which provides the base for university involvement in making a difference through promoting student access to changemaking and design thinking.
Social entrepreneurs are individuals with innovative solutions to society’s most pressing social, cultural, and environmental challenges. Social entrepreneurs are ambitious and persistent — tackling major issues and offering new ideas for systems-level change. They model changemaking behavior, and catalyze organizations and movements where everyone can be changemakers.
Ashoka is primarily a network of Ashoka fellows who are recognized and supported to realize and implement innovative ideas related to wicked social problems. In many of the universities affiliated with social entrepreneurs, students are engaged in courses to prepare them to work with communities and universities to make the connections between research and innovation viable. Ashoka currently focuses on the rapid development of ideas and prototypes and rapid testing of social enterprise ideas.
Culture Shifts with Digital Health
We begin with a bit of history about Innovation, which has always been a part of human life as the major driver of change as long as the innovation is not too disruptive. The first industrial revolution of mechanization, starting at the end of the 18th century replaced agriculture as the focus of society. The second industrial revolution was made possible because of new energy sources of electricity, oil and gas to run automobiles, planes and communications options. Business soon became the focus of invention and innovation. By the third industrial revolution computers, electronics, biotechnology and telecommunications introduced an information age enabling advances in space exploration and advanced automation (robotics). The focus on the business of invention and innovation prompted new terms such as social innovation and social enterprise to make space for solving important social problems that resulted from rampant commercialization of all forms of human activity. Social entrepreneurship has captured the need to focus innovation to make life better and sustainable. The concepts of innovation in healthcare are still much closer to the ideals of invention or discovery to solve problems through research and biotechnology. However there is a dramatic rise in social innovation with advances in medical technology changing our beliefs about a key driver in our economy and, by all accounts this will lead the way to social reorganization.
At this point we broaden our scope to study advances in computing and communications that arose during the third industrial revolution in the latter half of the last century. The impact, particularly for patients and citizens was dramatic because they now had access to health related science and information that had been protected by health professionals. They were able to study their conditions, connect with others with similar conditions and treatment options in order to become informed about their options. It was at this time that the events of this chapter unfolded, particularly Grey Matters and PaCER that attracted seniors and patients who expected to be able to understand research and connect with others.
These advances accelerated a fourth, digital revolution that combines digital, physical and biological technology that promises to dramatically impact our concept of who we are and what is possible in health research and care. While computers and communication technology empowered citizens, this emerging epoch is a two edged paradigm. It promises reduction in the burden of illness, extended productive life and new forms of healthcare delivery. Especially in the early stages of enthusiastic development of technology there are serious risks in the lack of real life data uncompromised by existing data biases, that will ensure EDI and the ability to customize technology not only for groups of patients but at an individual level. Innovation requires commitment to include patients and communities to provide not only data but input into the potential for personal control and adaptation. This early involvement in the innovation cycle is not just good practice, it is critical to the safety and wellbeing of citizens.
The issues related to data ownership have never been more critical during the current rush to new technology and decision tools. Teams and companies, from large systems to small community agencies purchase data sets without understanding the potential biases and dangers and without any way to test the technologies. Apps and data are sold and reused without accountability or oversight. As with most technology, the end users - the patients and the front line staff - must be ready to question and evaluate. To date, the consumers have been able to make decisions but as technology is worn or implanted these decisions become more difficult.
There are many specialists involved in new technology development, particularly algorithm teams using artificial intelligence informed by machine learning. These early teams could avoid many of the high risk pitfalls inherent in data sets if they were able to use peer research to provide real life, diversified data that overcomes the sources of systemic discrimination. While this will be costly in the beginning, refitting or decommissioning technology is also costly. If we employ a science of engagement to guide technology and decision making tools that can be adapted and customized as needed the eventual goal of informed and motivate patients while reducing systemic discrimination.
The following news report excerpt captures the essence of the emerging digital culture shift that is occurring from a patient perspective. It represents the first level of transfer of healthcare to patients and community options (Seven Visions of the Future of Healthcare)
We’ve got to start looking at healthcare from the perspective of the patient. That is first to help the patient understand the drivers that impact their chronic condition better so they can play a more active role in managing it. This could be getting involved in health rather than just sickness, supporting and coaching them in relation to their sleeping, eating, smoking, drinking and exercise as well as all aspects of managing their condition properly, such as adherence to medication. The aim is to proactively keep them well rather than react when they become ill.
It’s not just telling them what to do (most people who smoke know that it’s bad for their health), it’s truly engaging them, providing them with smart technology so they can closely monitor themselves. They can have devices that will constantly measure the likes of their heart rate, blood pressure, breathing, weight or activity levels.
This data can be streamed from their device or smartphone app, and processed through algorithms that show how their health is evolving. Patterns created can show that intervention is needed or this person might, for example, be at risk of a stroke or a fall. Both the person and remote-care team can monitor their health. Patients can be engaged through social networks and competitions. “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.
We’re essentially talking about a 24-hour connection between the patient and those monitoring them. Chronic patients have to live with the condition 24/7, so the care should reflect that.
If we include patients trained to engage populations in creating real life data, the shift to personal control, and community options will accelerate. Patients and those who are aging and those with disabilities and chronic illness already have the expertise in health systems to become advisors and partners in a new future for health and health care. All it will take is investment in building a health climate based on emancipatory challenges inherent in a science of engagement.
Emancipatory patient movements are percolating and patients are discovering the power of personal and patient led research. (The patient movement as an emaciation movement) Established researchers may still balk at token patient engagement criteria for grant approval, and funders may still be reluctant to move beyond minimum payment for patient advisors or partners. However, there are examples in citizen science, peer research and patient led research, where patients are trained or are developing training themselves
to research problems on the margins, challenge formal research practices that are discriminatory, and search for research allies to support these new options. (VOICE: Science for Patient Advocates)
The journey began with institutional and community innovations and ended in an era being changed by technology. The journey of progress was balanced by cautionary tales of resistance to change.
- Change within systems has become a waiting game, new language is absorbed into established systems until the next innovation is introduced to change the language
- In community services innovation survives when it increases financial sustainability, provides simple routines for staff and clients and engages media
- Peer research opens space for social change, peer support and community entrepreneurship as long as champions make space for patient and community expertise,
- Technologies are an expendable and renewable source of change as long as they are intrigue professionals enough to promote change and make care less costly
- Emancipatory patient movements are emerging within the paradigm shift to digital medicine and research journals are slowly moving beyond patient engagement as including patients at the table, to encouraging patient prepared meals for everyone.
You might explore the changes you have been part of to identify how you saw ‘the systems’ involved. Try to identify the role of the patient, the professional as they were impacted not only by the established expectations but by the incentives for change. How might that experience have been different is there was a role for peer input or if the technologies emerging today had been available.