Patientled

Patient-led refers to initiatives in health care and health research that are initiated and guided by patients, their families, or patient organizations rather than by clinicians or researchers alone. It emphasizes experiential knowledge alongside clinical expertise and aims to ensure that priorities, design, and outcomes reflect patient needs.

In practice, patient-led activity can take many forms, including advocacy groups, patient-led research consortia, patient advisory boards integrated into clinical programs, patient governance of health projects, and the development of patient-facing tools and resources.

Methods used include participatory research, co-design and co-creation with patients, priority-setting partnerships, and patient-led data collection and analysis. Frameworks such as patient and public involvement in research are often institutionalized to ensure ethical oversight and accountability. Priority-setting partnerships, such as those run by the James Lind Alliance, help align research agendas with patient-identified questions.

Potential benefits include improved relevance of research questions, increased patient engagement and adherence, more usable tools, and greater transparency. However, evidence is variable, and success depends on how well patient voices are integrated and resourced.

Challenges include ensuring representative participation, avoiding tokenism, managing conflicts between patient priorities and scientific feasibility, and providing training and resources for effective involvement. Ethical considerations include consent, data governance, and safeguarding.

See also: patient-centered care; patient engagement; participatory research; co-design; patient advocacy.