Achieving patient-led research

The COVID-19 pandemic has opened up a direct channel between scientists and the public. Keeping it open must become part of scientists’ mission.

Secondary use of patient health data can be a boon for medical research and development, but only if researchers can cultivate patient trust in the system.

Patients with rare diseases, and the scientists who study those diseases, were long inhibited by geographic sparsity. But the social-media age has made it much easier for them to band together to leverage their experience and push forward change.

In recent years, patient research groups have spurred culture shifts in biomedical research and governance, with many health experts lauding the benefit of these groups’ being embedded in the research process. Some, however, question private-sector influence in these groups’ newfound power.

Three examples show how public participation in research can be extended at every step of the process to generate useful knowledge.

To assess whether research is relevant to society, ask the stakeholders, say Catherine Durose, Liz Richardson and Beth Perry.

Reuse of patient data for research purposes could be very fruitful. However, too seldom are those whom the data are from—the patients—involved in how their data should be used.

Patients’ contributions to biomedical research have quickly been shifting from passive participant to active contributor. But what happens when the person with lived experience of the disease becomes the clinical researcher?

Melanoma Patient Network Europe has a lot of experience in connecting researchers with patients, including organizing patient-led conferences. The group’s founder explains how productive interaction can be transformative to research.

The Human Cell Atlas has been undergoing a massive effort to support global scientific equity. The co-leaders of its Equity Working Group share some lessons learned in the process.

A patient partner provides perspectives on the development of the SPIRIT-AI and CONSORT-AI guidelines.

A genetic study of angiosarcoma designed through an online patient-partnership model overcomes key barriers in rare-disease research and provides indicators of clinical approaches.

A framework of patient-partnered research allows patients with angiosarcoma to share their samples and clinical records securely to accelerate molecular characterization of tumors and identification of therapeutic approaches.