It has become clear that certain barriers and opportunities for innovation as well as governance and ethical issues play a role in participatory health research and innovation – even if traditional regulatory approval does not. Specifically, barriers to innovation include, but are not limited to: the inability to quit one’s job to dedicate time and energy to finding alternative treatments, cures, and ways to navigate the medical/clinical field; the high cost of regulatory approval; and the cost and complexity of acquiring the necessary knowledge for medical and technological literacy, which may or may not be seen as legitimate by traditional actors.
Traditionally, knowledge legitimacy has been tied to scientific knowledge; but citizen health innovators are beginning to change that paradigm and inject their experiential knowledge into biomedical research. Before bio-citizens will be seen as legitimate health innovators in the eyes of the traditional scientific and policy communities, they will need to overcome some obstacles and gain the trust of scientists and regulators.
Towards the end of the workshop, participants were asked to write down ideas for what should be included in a tool kit for current and future bio-citizens. What should we put in it? What do you wish you would have had? What would you leave out? Many of these ideas stemmed from Boxes 1-3: Opportunities and Challenges. Building off those ideas and the discussions throughout the workshop, researchers and bio-citizens have begun compiling a tool kit for future bio-citizens that we hope will become a living tool-kit that evolves as the community of bio-citizens evolves. The goal is to develop engagement channels between patients-innovators, crowdfunders, ethicists, and regulators to design adaptive oversight mechanisms that will foster a culture of empowerment and responsibility. Concretely, the authors of this report started building a taxonomy of different forms of innovations where you would also find, in parallel, an assessment of the risk-benefit trade-off defined in collaboration between bio-citizens and regulators.