Research participation, and resources for patients to become involved in improving patient outcomes

The benefits for patients of becoming actively engaged in their own healthcare, and also of participating in research endeavours and clinical trials can lead to improved patient outcomes (Vahdat, S., Hamzehgardeshi, L., Hessam, S., & Hamzehgardeshi, Z. (2014). Patient involvement in health care decision making: a review. Iranian Red Crescent medical journal, 16(1), e12454).

Patients who actively participate in research report feeling less isolated, a greater sense of purpose, and in some cases empowerment. With regard to patient registries or online patient health discussion forums, patients can connect with a wider community of patients who have similar conditions. These platforms often lead to improved patient well-being, improved levels of understanding, as well as greater levels of global knowledge, even though these and similar research activities are designed primarily to benefit patients in the future. Examples of this sort of phenomenon can be seen in the table below, which often is associated with patients who have become motivated to assist others by sharing their conditions, symptoms and treatments using online platforms.

Identifying research priorities	James Lind Alliance (http://www.jla.nihr.ac.uk/)
Identifying research priorities	PCORI (www.pcori.org)
Leading and designing research	PatientsLikeMe (www.patientslikeme.com)
	23andME (www.23andMe.com)

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)

This table was copied with several modifications from: Sacristán, J. A., Aguarón, A., Avendaño-Solá, C., Garrido, P., Carrión, J., Gutiérrez, A., Kroes, R., … Flores, A. (2016). Patient involvement in clinical research: why, when, and how. Patient preference and adherence, 10, 631-40. doi:10.2147/PPA.S104259.

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

Among other evolving possibilities of the involvement of patients in research is the co-production of research outcomes by collaboration between researchers and patients. Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge. See Guidance on Co-Producing a Research Project. Also see the “Involve” method and co-producing research:

In addition to the above, engaging patients to manage and monitor their own health by using health information technology positively changes patient outcomes, which is the conclusion of a study published in the July 2012 issue of Health Affairs. The principles of this approach are as follows;

For Providers:

Proactively providing patients with health data including laboratory results.

Creating feedback mechanisms, such as Patient Advisory Councils, so that patients can provide input on their care, and giving patients resources to help them maintain and manage their health.

Encouraging patients to be full partners on the health care team.

For Patients:

Using the health data that the clinicians offer to develop health goals, maintain and follow treatment instructions and track appointments.

Providing feedback to clinicians regarding how the care provided is working.

Using the resources offered to better understand health issues and take a larger responsibility for health care.

Encouraging clinicians to be participatory providers.