Citizenship implies a set of rights and responsibilities for both the individual and the state – a social contract. During the course of interviews with more than 150 thought leaders as part of our Rx for Innovation project, FasterCures identified a desire for a similar social contract between individuals and the biomedical research and health-care systems, which we call #HealthCitizenship.
In medical research and health care, we will all be patients one day and have a vested interest in moving innovation forward. #HealthCitizenship requires a more knowledgeable participant population, and having control over personal health data is one way to put people in a better position to actively engage with their doctors and monitor and track their health and well-being.
We need to make sure that the social contract of #HealthCitizenship is a two-way street – people get engaged, and the system works to make it easier for them to do so. For example, a perennial challenge to medical product development is the recruitment of participants into clinical trials, and their retention once the trial has begun. While individuals have a responsibility to seek out trials, trial sponsors have a responsibility to actively engage with participants to ensure that the trials are designed to study what is most important medically to participants, to be as user-friendly as possible so that participants are able to remain enrolled for the duration and to return meaningful results to participants.
The goals of the #HealthCitizenship movement are to:
- Increase public engagement in biomedical innovation and health care.
- Advocate for the individual’s rights within this engagement.
- Establish the responsibilities of the system’s institutions (e.g., biopharmaceutical companies, universities, health-care providers).
To achieve these goals, FasterCures will:
- Educate all stakeholders about the roadblocks and opportunities for #HealthCitizenship across the system, with a particular focus on those approaches that use patient input
- Partner with other stakeholders, including patient-based organizations and industry, to identify pilot projects and/or case examples of #HealthCitizenship
- Advocate for more patient control over their health data
Learn more about the #HealthCitizenship movement: