Patients | Choices | Empowerment - Discovery Framework
“Imagine a world where patients can make decisions with confidence and clarity, in concert with people who care and can help. Such a world generates empowered patients and offers collaborative solutions at every stage of health care and treatment.” - Jean Lim, President of the Amgen Foundation
Sadly - this world is not yet a universal reality.
The challenge of patient empowerment was brought into greater focus in 2001 when the Institute of Medicine’s Committee on the Quality of Health Care in America published a report that stressed the need to fundamentally redesign the US health care delivery system. How? Recreate the health care system around patients and their families, i.e. patient-centered care.
Essentially, patient empowerment is to build the capacity of patients to help them become active partners in their own care, to enable them to share in clinical decision making and to contribute to a wider perspective in the health care system. However, even after a decade, progress made in the quality of health care and the empowerment of patients is not yet to the degree of success that the report has laid out. Navigating any health care system, let alone the US health system, is often overwhelming and intimidating, and in the international context, health care delivery is far more fragmented due to a variety of socio-economic, cultural and institutional factors that may be out of the patient’s control. So then one might ask - how can we change the patient experience so that she, her family, and her community are not only informed, but can confidently access and navigate health care?
Ashoka’s Changemakers, in partnership with the Amgen Foundation, set out to answer this question, explore the field, and find solutions that could truly change patient-centered care. Using the Changemaker’s analytical methodology, called the Discovery Framework, we are helping to provide a better understanding of a social entrepreneur’s view of the world and how they approach social issues. We start by identifying, researching and interviewing multiple Ashoka Fellows, experts and thought-leaders in the field, and then framing their combined insights as actionable barriers (the core components of a problem) as well as design principles or potential solutions that help clarify opportunities for true systems-change.
For example, one of the barriers identified through our research was the “the intimidation factor.” In many cases, intimidation alone can inhibit a patient’s ability to know and access what care is already out there. In most parts of the world, geographic access to specialists often doesn’t exist, and with a limited number of clinicians available as well as growing health care disparities, overall access to quality care could be severely constricted.
Additionally, a potential solution or design principle highlighted in the Patient Empowerment Discovery Framework, “creating non-traditional associations,” highlights the need to explore “hidden assets” within communities that can be used to improve the patient’s experience as well as the services they receive. This means including health practitioners, civic clubs, universities, insurance companies, governments, etc. in the patient experience so that multiple community members are working in tandem to create an ecosystem of accountability that puts the patient first.
Finally, these barriers and design principles are then mapped in a powerful tool, the grid (pg. 13 of the Patient Empowerment Discovery Framework
), that points to areas of improvement within a field and where there is potential space for innovation or for a solution to be invented!
We’ve all come to realize that a ‘one-size-fits-all’ approach is hardly applicable in most of the world, but drawing upon the practical insights and lessons of leading social entrepreneurs, experts and thought leaders around the globe can help shed some light on how change is possible, and what approach would be best suited in a specific context.
For more important lessons from the world’s leading social entrepreneurs, profiles of their work, and the full list of barriers and principles please click here for the Patient Empowerment Discovery Framework.
We welcome your input and ideas for this topic and look forward to hearing about your innovations in addressing how we can change the patient experience
