Patient involvement in clinical research: why, when, and how

Figures & data

Figure 1 How to engage patients in clinical research?

Table 1 Specific initiatives to engage patients in the research process

Identifying research priorities	James Lind Alliance (http://www.jla.nihr.ac.uk/)
	PCORI (www.pcori.org)
Leading and designing research	PatientsLikeMe (www.patientslikeme.com)
	23andME (www.23andMe.com)
	OMERACT (www.omeract.org)
Improving access to clinical trials	European Union (www.clinicaltrialsregister.eu)
	Trials 4 Me (http://trials4me.lillycoi.com/)
	NIH (https://clinicaltrials.gov/)
Adequate information about the study	Readability of informed consent documents and patient information sheets
Assessing patients’ experience	Systematic collection of opinions and experiences of the participants
Informing participants about the study results	Process to communicate the results at the end of the study
Disseminating and applying research findings	Promoting transparency
	Databases of randomized clinical trials
	Information for patients in medical journals
Information and education	FDA (www.fda.gov/ForPatients)
	NIH (www.nih.gov/health/clinicaltrials/index.htm)
	ASCO (www.cancer.net/)
	Oxford University (www.healthtalkonline.org/)
	EUPATI(www.patientsacademy.eu)

Abbreviations: EUPATI, European Patients’ Academy on Therapeutic Innovation; FDA, Food and Drug Administration; NIH, National Institute of Health; PCORI, Patient-Centered Outcomes Research Institute; OMERACT, outcome measures in rheumatoid arthritis clinical trials; ASCO, American Society of Clinical Oncology.