The Shifting Role of Patients in Today’s Healthcare System: Introducing Changemaker Health
The health sector is undergoing an evolution in the role of the patient. Actors across the sector face a competitive necessity and market demand to create more open and participatory pathways for patients and customers to get involved in their own healthcare. The shift toward patient empowerment can be referred to as “changemaker health”.
What does changemaker health look like?
The key to changemaker health is a relationship of co-ownership between health providers and patients. These shifts in provider-patient dynamics and their implications on organizational models operate at the institutional, community, and individual levels.
Changemaker health at the individual level
Individuals and families engaged in changemaker health are equipped with the information, skills, tools, support, and resources they need to pursue health and wellbeing on their own terms. This could include, for example, having access to and control over their own health data, being equipped with simple and affordable self-diagnostic and disease management tools, or engaging with health coaches on a regular basis. An important component of changemaker health is that individuals feel valued by their community and society and are equipped with the power and ability to improve their own lives as well as others. Within changemaker health, individuals and families have the skills to practice self-awareness, mindfulness, and empathy so that they can effectively help others and are equipped to make decisions for themselves based on their own health objectives rather than on social or environmental pressures.
Some strategies for cultivating changemaker health at the individual level include:
- Equipping people with the skills, resources, community, and environment they need to for a strong sense of self, including developing their identity, empathy, self awareness, and the ability to heal from trauma
- Valuing individuals for their role as informal caregivers and creating opportunities for individuals to play a role in cultivating the health of their community
- Equipping people with tools to actively pursue wellbeing and successfully adopt healthy behaviors
- Making institutional space for patients to co-create solutions with their healthcare providers
A model that demonstrates the move toward changemaker health at the individual level is the concept of a patient-owned and controlled medical records. Patients Know Best, founded by Mohammad Al-Ubaydli, is a personal health record company that provides patients with a secured online space to invite their clinical team and family members to view their health records. Patients can also send secure messages to their doctors with questions, hold structured online consultations, and chat with other patients. The organization is integrating use of the platform into medical school training so that doctors at the very beginning of their careers can learn how to interact with patients who are equipped with their health data. Patients Know Best is able to ensure widespread affordability and accessibility through its partnership with the U.K.’s publicly funded healthcare system. The platform is integrated into the U.K.’s National Health Service secure network for use by any patient with any clinician in the U.K. or overseas and is getting ready to scale to other countries. Check out our blog post for a more in-depth case study of Patients Know Best.
Changemaker health at the community level
Communities strengthened by mutual trust and collective caregiving enable changemaker health at the community level. A community of changemaker health is characterized by networks built on trust in which everyone has a valuable role to play in the health of their community and its members. Community members can serve as a safety net in times of need, and caregiving is seen as a valued and shared responsibility among the family unit, neighborhood, school, workplace, and beyond.
Active cultivation of a trusting community that shares in caregiving might involve some of the following tactics:
- Community building through storytelling
- Online communities where personal information is protected
- Mechanisms for resource sharing, such as community lending circles
- Trainings in how individuals can support their community in providing care
- Infrastructure for consensus-based and democratic decision making
Scaled in 25 public and private hospitals throughout India, social entrepreneur Edith Elliott, founder of Noora Health, is smoothing patients’ transition from the hospital to the home by taking a highly compassionate, untapped resource – families – and training them to be active members of a patient’s recovery team. Noora Health equips families to become an extension of the professional hospital-based medical team by taking on a critical role in disease prevention, detection, and management, particularly during post-surgical care of patients. Noora Health is not an alternative to traditional hospitals. Rather, it partners with hospitals across India, both public and private, to augment the care they provide by establishing a seamless relationship between the hospital staff and patients’ families. Noora Health has trained over 50,000 family members to date. The training program works to be culturally relevant and locally specific, further augmenting trainees’ ability to cultivate healthy behaviors for themselves and their community. This model ensures that every patient has a supportive community wrapped around them.
Changemaker health at the institutional level
The healthcare systems that surround individuals and communities can adopt policies for patient empowerment to cultivate changemaker health at the institutional level. Some strategies that institutions can employ to support changemaker health include:
- Shifting from providing top-down transactional services to opening up institutional space for co-creation with patients;
- Offering patient-centered care that addresses institutional oppression and the social determinants of health; and
- Shifting from siloed treatment of illness to active cultivation of wellbeing across sectors.
An organisation seeking to deliver a changemaker approach at the institutional level is Iora Health. Founded by Rushika Fernandopulle, Iora Health demonstrates how to build a new model for primary care delivery that is relationship-driven and centers patient empowerment through three distinguishing pillars:
- Breaking away from the traditional fee-for-service payment structure for healthcare delivery and replacing it with a monthly membership fee that grants patients unlimited access to the clinic, cuts administrative costs, and creates an incentive for healthcare providers to focus on patient retention and health.
- Cultivating a relationship-driven and patient-centered culture by pairing every patient with a culturally compatible health coach in addition to their primary care physician, creating an environment in which healthcare professionals must get permission to say “no” to a client, and implementing an open access scheduling system that guarantees same day appointments for sick patients.
- Organizing patient medical records through a Population Health Management approach that allows for the proactive delivery of care (e.g. tracking which patients are meeting their goals or finding patterns among patients with diabetes), replacing the costly traditional system that is primarily designed for insurance and billing purposes.
Iora Health delivers these innovations through its partnership with organizations that manage the health insurance of their members--including large companies like Boeing as well as private groups such as unions--and having them switch to Iora Health. When its partners make the switch, they save money by escaping the fees that insurance companies normally charge. Iora Health currently has over 10 practices across the United States and is continuing to scale.
The changemaker health ecosystem
With innovations in patient empowerment working at the individual, community, and institutional levels, an ecosystem for changemaker health can emerge across society. Neglecting to cultivate patient empowerful at any one of these levels, however, could result in an environment that is disempowering to patients. For example, changemaker health does not require patients to be their own doctors or for family members to be solely responsible for the care of their loved ones. Changemaker health does not imply that there is no longer a need for insurance companies, governments, private companies, and other big players at the institutional level to provide widespread access to health care. Rather, changemaker health is a guiding philosophy that can be applied at multiple levels to help create a world in which all people--regardless of race, class, gender, and identity--have affordable and easy access to wraparound, culturally relevant healthcare that values their experiences and wholistically meets their needs.
What drives the shift toward changemaker health?
What are some of the drivers that are propelling patients and healthcare institutions to adopt models for patients playing a more participatory role in their health and wellbeing?
Financial Necessity & the Rise of Chronic Diseases
A myriad of challenging trends within the health sector including increasingly high costs, a lack of focus on preventative measures, and a siloed approach to disease treatment create a financial incentive for innovation in the role of patients within healthcare systems. Overburdened healthcare systems require a paradigm shift toward equipping individuals to access healthy environments and behaviours to stay well, versus only treating people once they’re sick or in crisis. This shift is especially vital to the 4 million people at the base of the pyramid. The rise of chronic diseases further necessitates innovative disease prevention and management solutions, including new behaviour change tactics. The World Health Organization estimates that the global burden of chronic diseases will increase by 57 percent by 2020. This rapid rate of change creates a major public health threat as well as rising costs for countries across the globe and for people of all income brackets. Developing countries are hit particularly hard as they face the double burden of both chronic and communicable diseases.
Emerging data on health disparities--both on a global scale as well as within specific countries--indicates the importance of centering equity and cultural sensitivity within healthcare delivery. For example, in the U.S.A, the maternal mortality rate for black Americans is 2.5 times higher than that of white Americans, and the disparity persists across all income levels. With such glaring disparity in health outcomes across identity groups, there is a clear need for patients to be involved in the design of health intervention programs so that services are widely accessible, culturally informed, and patient-centered. In turn, institutions need to make the space for patients, particularly those from from marginalized groups, to be able to control their own care.
Social Determinants of Health
Data on the social determinants of health--such as economic stability, education level, physical environment, food security, and community context--indicate that individuals’ home environments and daily life can play a significant role in their health, demonstrating that the pursuit of health cannot start and stop in the doctor’s office alone. Consequently, innovators working on the frontier of health tend to work across sectors to equip people with the resources and support they need to improve the underlying factors impeding their health. For example, social entrepreneur Al Etmanski founded the PLAN Institute, which created a groundbreaking savings plan for people with disabilities. The Registered Savings Disability Plan is a Canada-wide matched savings plan that allows people with disabilities to achieve economic stability and independence.
Holistic Approaches to Health
There is growing evidence that modern, Western society--characterized by limited access to nature, extended time periods spent sitting and looking at screens, eating on the run, loneliness, stress, and isolation--is negatively impacting health. Scientific American reports that 18 studies published in the past 16 years--aggregating data from 800,000 people total--found that sitting for too long each day can be a major contributor to mortality and morbidity. In turn, there is growing evidence for the positive impacts of yoga, acupuncture, meditation, and other mindfulness practices, as well as a deepening understanding of the interactions between mental health and physical health. The American Psychological Association reports empirical evidence that mindfulness practices among mental health professionals and patients alike can have a multitude of benefits, including reduced rumination, memory boosts, improved focus, less emotional reactivity, and decreased stress and anxiety. Empirical evidence also points to the power of a regular yoga practice to decrease chronic pain. Emerging science about the interrelation of our health and our gut bacteria further suggests the sometimes surprising ways that our bodies and lives are a complex and interrelated system requiring holistic, individualized attention and treatment. These holistic approaches to health open new pathways for individuals to pursue healthy behaviors for themselves and others.
Growth of Technology
The availability of new technology is making it more possible than ever for patients to take control over shaping healthcare systems to meet their needs. From online and mobile platforms, SMS and video communications, social and online media, to high tech innovations in treatment and prevention programs, patients are now better informed and better positioned to demand patient-centered treatment and to co-create health solutions. Consumers across industries are increasingly able to share their perspectives and demand a greater voice through social media and other digital channels that lower the barrier to engagement and create demand for increased transparency and openness.
Areas for Further Exploration
Social entrepreneurs are responding to the need for changemaker health by creating new models for healthcare that shift the control and design of health services from hospitals, clinics, and doctors – where it has traditionally sat – toward communities, families, and individuals. Changemaker health is more than equipping individuals with technology that tracks daily steps or sugar levels. Rather, it’s about enabling individuals--especially those who are well trusted within their community--to become co-owners and co-creators (i.e. implementers) of practical solutions to health provision. This is an approach that could lead to much more accessible, equitable, patient-centered, and affordable health solutions for populations globally.
Ashoka’s community of social entrepreneurs demonstrates that it is possible to shift institutions, communities, and individuals toward changemaker health. Strategies used by social innovators include:
- Expanding the definition of “health care professional” by elevating lived experience as expertise, giving more power to citizens, and valuing informal caregiving and health coaching roles
- Working across sectors and with multiple stakeholders to cultivate holistic partnerships (e.g. across the social and business sectors)
- Focusing on prevention and targeting the root social problems for sickness and disease--such as environmental factors and systemic oppression based on race, gender, class, or other identities--instead of only treating disease symptoms or waiting to intervene until a crisis emerges
- Aligning incentives within health systems for collaboration and the active pursuit of health
- Addressing information asymmetry and giving patients access to and control over their own health data
- Delivering patient-centered care through equipping patients to co-own their care and making institutional space for provider and patient co-creation
Over the course of this article series, we will explore these and other strategies used by social innovators to create a world of changemaker health.
Ashoka is a global network of leading social entrepreneurs - individuals who tackle society's complex social problems with scalable, innovative solutions. Launched in 2010 by Ashoka and the global healthcare company Boehringer Ingelheim, the Making More Health (MMH) initiative works to identify, support, and scale innovative, entrepreneurial solutions to global health challenges. To date, the MMH initiative has identified and supported 80 social entrepreneurs in the field of healthcare from 47 countries around the world. This article series will synthesize the emerging patterns and insights of the MMH network, as well as other social entrepreneurs working in healthcare, to explore the theme of changemaker health.
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Authored by Megan Strickland, Knowledge Manager at Ashoka Changemakers
Editing and contributions by Sarah Jefferson and Yeleka Barrett