“If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.” Leonard Kish
Have you detected a recent upsurge in activities concerning patient engagement in health research? If you are involved in patient advocacy, you may be increasingly aware of discussions around the importance of patient-oriented research. However, despite strong acknowledgement of the benefits of engaging patients in research, gaps still exist between the theory and the practice of patient engagement. This article explores the ways in which patient participation in health research can move beyond rhetoric towards activity which results in research better aligned with meaningful patient outcomes.
What is patient participation in research?
You may notice that there is a wide range of terms used to describe patient oriented research. Depending on which country you live in, you’ll hear a variety of terms from “patient/public/service/user/engagement,” to “participatory research,” “patient and public involvement,” and “co‐researcher/ co‐investigator.”
While there may not be a consensus for the terms used to describe patient oriented research, there is one fundamental concept that sets it apart from traditional research. In the past, patient participation was limited to involvement as research subjects. Research was undertaken by researchers to and for patients. When patients are actively engaged, research is undertaken jointly with them. This is an important step in ensuring that the real-life experiences of patients are considered in determining research priorities that are most relevant to patients themselves.
Why should you engage in health research?
There are many reasons why you may want to get involved in health research. Perhaps you wish to understand the research behind your disease and hope that involvement will give you direct access to knowledge of new treatments. You may also want to find a way to put your personal knowledge of the healthcare system and your experience of your condition to good use. In this way you can play a part in improving care for other patients. Those patients who take an active part in aligning research with real-world needs of patients and caregivers report feelings of increased self-confidence. By developing a stronger advocacy voice they feel more empowered, respected, and valued.
By engaging in research you can broaden the agenda beyond that set by health professionals and researchers. As someone who directly experiences illness and medical care, you can bring the perspective of what it is like to live with a disease. You’re uniquely positioned to contribute to research by sharing important ideas about what research would be most beneficial to you and other patients like you.
How can you get engaged in research?
Patients can be engaged across a spectrum of research from planning and priority setting to disseminating findings. The deeper the degree of participation, the greater the influence you will have in decision making. Becoming involved at the outset of the research project means you can identify relevant research questions and meaningful study endpoints.
Historically, researchers have framed questions which are not particularly relevant to patients. As an example, the research priorities of patients with osteoarthritis of the knee and the clinicians looking after them, were shown in a study to favor more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomized controlled trials in patients with osteoarthritis of the knee were drug evaluations.
Level of Involvement
|Identifying/Prioritizing||Determining the research topic, alignment of priorities, and identification of research questions.|
|Design||Ensuring that the research methods are sensitive and appropriate for study participants.|
|Management||Recruiting study participants; conducting interviews; being an active member of a steering group.|
|Data Analysis||Highlighting findings that are most relevant to patients; summarizing the research for lay audiences.|
|Dissemination||Improving access to patients via peer and social networks and accessing difficult-to-reach patient groups.|
How do you know if participating in research is right for you?
It’s important to understand the reasons why you are being asked to take part in a research project. You and the research team should have a shared and clear understanding of what you are being invited to do. Sometimes researchers look for patient participation to fulfill a funding requirement, without being clear about the role that patients will actually take. Without a clear understanding of what meaningful engagement looks like, researchers may end up including patients solely to tick a funding box. Taking part in this kind of tokenistic research can be extremely unsatisfying and leave you feeling undervalued and frustrated.
Asking the following questions of the research team can be useful to help you decide whether or not a particular research project is right for you.
- What level of involvement do you want from patients?
- What change can happen as a result of this engagement activity?
- What is my role? (Ask for a written “job” description.)
- Are there any particular skills you are looking for? Do I need to understand research methodology, acronyms, and technical language? Will training be provided if I’m not familiar with research processes?
- What is the time commitment you will expect of me? (You should take into consideration your other work or family commitments. For instance will you need to take time off work to attend meetings?)
- Where will meetings be held? Are there accessibility issues you need to be aware of?
- What preparatory work will be required to carry out in advance of meetings (e.g. pre-reading?)
- How will I know if my input is incorporated in the research findings?
- If my feedback isn’t used, will you share the reasons why not?
- Are you paying patients? (Reimbursements for out‐of‐pocket expenses should be viewed as an absolute minimum.)
If you’re not satisfied with the answers you receive to these questions, then you should consider whether the project is something worth giving up your time for. Participating in research is time-consuming and sometimes it can be emotionally and physically draining. Consider too at what point you are in your own health journey. Will participation in research place an added burden on your treatment or recovery? In making the decision to become involved in research, you should always balance your own health needs with the desire to be supportive of research and the research process. Heed the advice of pediatric neurodisability advocate, Jennifer Johannesen “if there is insufficient effort to justify and substantiate what is being asked of you, or it’s unclear as to why you’re involved, you can decline.”
Meaningful engagement is about shifting the traditional paradigm of patients as passive participants, to one in which we are fully involved as active contributors who have a sense of ownership in outcomes. You need to be able to trust that you are being genuinely heard and your concerns are being acted upon. Look for projects that champion diversity, reciprocal trust, and strong sustainable relationships. Ask for no less than this – research that respects your unique perspective and expertise and values your contribution as an equal partner in the research process.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.