How can a patient help with medical research?

How Patients Can Contribute to Medical Research

Patients should be actively involved throughout the entire research cycle—from setting research priorities and designing studies to analyzing data, disseminating results, and serving as research ambassadors—not merely as study subjects but as equal research partners. 1

Core Areas Where Patients Can Help

Research Priority Setting and Agenda Development

• Identify research questions that matter most to patients, which often differ significantly from what clinicians prioritize 1
• Propose new research ideas through digital platforms, patient advisory committees, or direct collaboration with research teams 1
• Participate in crowdsourcing initiatives and web-based surveys to establish research agendas 1
• Help prevent mismatches between patient needs and scientific focus, ensuring research addresses real-world concerns 1

Study Design and Protocol Development

• Co-design clinical trials, questionnaires, and digital tools (smartphone apps, websites) to ensure they are patient-friendly and relevant 1
• Review and provide feedback on study protocols using plain language to improve clarity 1
• Serve on patient advisory committees or steering groups to guide research direction 1
• Help select meaningful outcome measures that reflect how patients actually feel and function, not just clinical endpoints 1

Important caveat: Patient involvement is strongly recommended for clinical research and guideline development, and should be considered for all other research types including laboratory-based studies 1

Recruitment and Retention

• Act as study ambassadors to disseminate information through social networks and patient communities 1
• Share personal stories to humanize research and attract participants 1
• Provide insights on barriers to participation (travel burden, eligibility criteria, side effect concerns) to help researchers address these obstacles 2
• Leverage connections with patient organizations to improve access and trust 1

Data Collection and Analysis

• Contribute experiential knowledge—practical insights about living with illness that complement clinical expertise 1
• Participate in interviews, focus groups, and workshops throughout all research phases 1
• Co-author publications and help interpret findings from the patient perspective 1
• Lead their own research projects with methodological support from professional researchers through patient-led research hubs 1

Dissemination and Implementation

• Co-write publications and present findings at conferences 1
• Translate research results into lay language for broader public understanding 1
• Advocate for implementation of research findings in clinical practice 1
• Provide feedback through newsletters, social media, and patient networks 1

Practical Implementation Framework

Essential Support Structures

• Financial reimbursement for time, travel, accommodation, and expertise through honoraria or hourly payments 1, 3
• Training and ongoing support to help patients understand technical methodologies 1, 3
• Clear communication about roles, expectations, and time commitments from the outset 4, 5
• Regular evaluation of patient satisfaction with involvement processes 1

Optimal Timing

Involve patients from the very beginning—ideally before study design is finalized—and maintain involvement through completion and beyond 1

Common Pitfalls to Avoid

• Tokenistic "tick-box" involvement without genuine partnership or decision-making power 1
• Failing to provide adequate preparation, training, or support for patient partners 1
• Using overly technical language without translation to lay terms 1
• Not reimbursing patients for their time and expertise 1, 3
• Excluding patients from key decisions about research direction 6

Specific Roles Patients Can Assume

Patient Research Partners: Equal collaborators involved in multiple research phases, contributing experiential knowledge alongside professional expertise 1

Advisory Committee Members: Provide strategic guidance on research priorities, study design, and implementation 1

Co-Investigators: Actively participate in research leadership, design, analysis, and publication 1, 4

Study Ambassadors: Volunteer advocates who disseminate results and recruit participants through their networks 1

Patient-Led Researchers: Develop and conduct their own research projects with methodological support from research teams 1

The evidence consistently shows that patient involvement enhances research quality, relevance, and successful implementation while empowering patients themselves 1, 4