A New Role for Patients
Currently, patient influence within the healthcare ecosystem is largely one-dimensional and limited to the interactions they have with care providers and insurance companies. These include coordinating one’s own care, finding appropriate doctors, doing in-depth clinical research, and negotiating medical payments with hospitals and payers.
Although patients now have access to an extensive network of medical information, both for educating themselves and digitally communicating with other patients about their health status and treatment options, their ability to influence medical research is non-existent [1]. Medical research, knowledge and treatment is currently defined and disseminated primarily by physicians, pharmaceutical companies, and patient advocacy organizations [2]. As such, opportunities for patients to pursue various agendas for increased medical research, approval of experimental therapies, and coverage for drugs, devices, and diagnostic procedures remain uncharted.
This limitation is largely a phenomenon of patients not being able to easily own, access, and share their health data. Clinical and medical history records continue to be fragmented and off limits to anyone other than physicians, insurers, and pharmaceutical companies. The resulting data silos separate patients from the powerful value of their own information and corners patient influence to the traditional patient-physician relationship.
Moving beyond this is a difficult task. Nonetheless, the confluence of digital health therapeutics, increasing patient-generated data, and blockchain applications in healthcare is a promising development towards a truly patient-centered healthcare ecosystem, one where patient health information is a digital asset assigned and controlled by patients. In the near future, the vast majority of patients will have a much more participatory role in not only their own diagnosis and treatment, but also in dictating medical research agendas.
Patients are tired of being disconnected from the health data they generate and with the value third parties derive from it [2]. They want to be directly involved in guiding the future of their care through participating in research [2]. To enable this movement, developers can build the necessary tools for patients to maximize benefits from contributing their valuable data. Rather than giving up their personal genomic information to companies, for example, they could use a mobile application to own that data and sell it to research initiatives that align with their principles and objectives. As such, patients can become active players that influence research agendas and ultimately policy by choosing proposals to support with their datasets and combined resources.
This is an opportunity for healthcare to transform itself from a bureaucracy that is always a step behind to a confident driving force that addresses the interests and needs of patients. For the benefit of all, we must strive to turn this paradigm shift from a pipe dream into reality. The first step toward success is returning control of patient data back to patients.
Citations:
[1] Weeks, William B., and James N. Weinstein. “Patient-Reported Data Can Help People Make Better Health Care Choices.” NEJM Catalyst
[2] Mandl, Kenneth D., and Isaac S. Kohane. “Patient Demand for Patient-Driven Health Information.” NEJM Catalyst
