It is a truth universally acknowledged that many patients no longer settle for contributing to medical research only as participants in research studies. Over the last decade or so, patients have increasingly made their voices heard in all nooks and crannies of the research process. Some of my favourite examples include:
Tom Isaacs, who was diagnosed with Parkinson’s disease at age 29, found himself frustrated with the state of research into a cure for the disease. He raised money by walking the full distance around Great Britain and co-founded the Cure Parkinson’s Trust (CPT) to “fund research to slow, stop and reverse Parkinson’s”. Tom’s contributions to changing how research in Parkinson’s is being conducted, especially how patients are being included more these days, cannot be overestimated.
Emily Kramer-Golinkoff, who was born with the rare disease cystic fibrosis, co-founded, similarily to Tom, a charity aimed at curing her own disease. The charity Emily’s Entourage, was founded to leverage the power of community in the fight against CF. Read more about Emily here and watch her at the conference Stanford Medicine X here and here.
Dana Lewis, who was diagnosed with type 1 diabetes at age 14, is probably most known for having designed her own pancreas using a RaspberryPi mini computer (read more here and here). But Dana is also PI (Principal Investigator, the title of the person leading a research project, a pretty big deal among researchers) of a project called Opening Pathways, exploring “the processes around discovery, research, and innovation in health and healthcare”.
The British Medical Journal’s patient partnership strategy, launched in 2014. The initiative is spearheaded by Tessa Richards, who is a physician, a family caregiver and a patient. The strategy has, among other things, resulted in a change in BMJ’s editorial process: authors of research papers are required to document if and how patients and the public have been involved in the study apart from being research participants. The document can be seen here. Read more here and here.
Benefits of patient-centered research
According to articles published in scientific journals, involving patients in clinical research beyond their obvious role as research participants, can contribute to:
- making the research more relevant to the people its aiming to help
- improving research questions and outcome measures
- improving trial recruitment and representativity
- improving trial experience and adherence to treatment
- reducing dropout rates
- improving dissemination of results
- increase the likelihood that research results lead to changes in healthcare and/or policy
- financial benefits
Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14.14.
Hoos A, Anderson J, Boutin M, et al. Partnering with patients in the development and lifecycle of medicines: a call for action. Therapeutic Innovation & Regulatory Science. 2015;49:929-939.
Levitan B, Getz K, Eisenstein EL, Goldberg M, Harker M, Hesterlee S, et al. Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI’s Patient Groups and Clinical Trials Project. Ther Innov Regul Sci [Internet]. 2017; Available from: http://journals.sagepub.com/doi/pdf/10.1177/2168479017716715
Staley K, Minogue V. User involvement leads to more ethically sound research. Clin Ethics. 2006;1(2):95–100.
But what is patient-centered research?
I can honestly say that I am not sure myself and there is a wide range of different types of research on the continuum from fundamentally basic research on cells in a lab to the kind of patient-driven research that, among others, Dana and I are conducting. I have listed some aspects that I believe are key to truly patient-centered research, partly based on BMJ’s document for authors submitting research papers (link here).
Key aspects in patient-centered research:
- All scientific articles are published open access. I strongly believe that no research can be patient-centered unless all scientific articles are published open access. On the flip-side this means that also lab-based basic science can also incorporate patient-centered aspects.
- Research designed with patients. This means that patients are included as an equal partner when choosing research methods, formulating research questions and choosing the outcome measures/clinical endpoints.
- Continuous improvements. Feedback from patients is collected continuously during the study and used for improvements.
What do you think? Do you agree with me? Have I missed important aspects? Do all criteria have to be fulfilled for research to be considered patient-centered or can there be levels? Please add your thoughts in the comments.