Extending and Supporting Patient-Oriented Research

Editor's Notes

• #2: Evidence-based. Big data. Every so often in health research, a new buzz word pops up that seems to be included in everyone’s proposal and presentation. In the last few years, “patient-oriented” has joined this vocabulary of buzz words. And because of this, people are really interested in making their research “patient-oriented”. My goal is to quickly share with you the true meaning of patient-oriented, and how to move it beyond mere buzz-word status. Truly patient-oriented research doesn’t mean having patients as participants only. It means having patients join us as partners in the development, conduct and sharing of health research, so that we all benefit from research that is more aligned to patients’ priorities, as much as research already aligns with the priorities of other researchers and policy-makers.
• #3: When I ask research teams if they conduct patient-oriented research, I frequently get similar responses. First, I’ll hear folks say that, “My research is already patient-oriented - I see patients in my clinic, and patients participate in my research!” Not quite. When we work as we do in healthcare, we are passionate. We hear stories that influence us, that touch us, and that disrupt what we know and what we thought we knew about healthcare and society. We study an illness or a body system through years of education and clinical practice. But, even as immersed as we can all be in our work, we do go home at the end of the day, to likely a different experience. And our reality changes for a while, until we put our researcher and clinician hats back on the next day. And because of that, it can never be the same as living with substance misuse 24 hours a day, 7 days a week. So while one may be supportive of the patient experience and the concept of patient-oriented research, and for all our good intentions, I think that a number of initial efforts at proclaiming oneself as “patient-oriented” had not achieved all that it could. There is so much we can do – and I include myself in these statements, too – to begin telling different stories in addition to the ones that we already can and do tell through our clinical and research work. The only way to do that, is to include patients, family members, and caregivers as partners in the work. It's the difference between research “on” vs. research “with”.
• #4: Similarly, when we have completed a piece of research and want to share it to use and change behaviour, practice, or policy, we often fall back to the same methods of knowledge translation and dissemination. Journal articles. Conference presentations.   We may find, though, that it doesn’t get as much uptake as we’d like. I would argue that having a patient partner would change that – inform the best way to reach them. Maybe in addition to conference posters and academic talks, it’s a series of Tweets, a post on a Facebook group. A guest blog. Short video clips. Infographic posters in waiting rooms.   In addition to recognizing that we cannot be experts in the lived experience, it is equally important to know that our knowledge generated from research, and our way of sharing that knowledge, does not necessarily hold the same value with those are often excluded from the table, but who ultimately will be impacted by the practices and policies that result from the work. We have to include these people as our partners to make sure that our work is maximized.
• #5: Now, you may be saying, “I barely have time for the research I do now – and now you want me to do this.”   Actually, yes, I am challenging to incorporate patient engagement into your research. If you accept my premise that patients as research partners is a good thing, and that we should be doing more of it, it’s fairly simple to start doing more of it. To start, it will cost you a cup of coffee. And an hour of face time with your potential patient partner. We forget in our digital age of texting and emailing the value of that in-person meeting. Identify a potential partner, shake their hand, and say hello. Talk with the patient and understand how they want to be involved in research and begin building that dialogue. Try not to emphasize titles and places of work. The successful patient engagement ventures all have the same thing in common – building and maintaining meaningful, respectful and honest research relationships for the long-term. And if you open the door to a seemingly simple yet welcoming chat, and that you need support and their expertise in your work, you will be astonished at the level of interest and the willingness to help.
• #6: As your partnership unfolds, be prepared to sit together in the fire.   What I mean by that is that you prepare yourself to be engaged with them and make physical and mental space to give and receive – like any other research colleague – honest feedback. It means not limiting yourself to the good, happy patient stories to direct your work, but to also give the floor to negative experiences, too.   It also means not asking for stories, though, as price of admission to be there. The patient experience and expertise will emerge through their participation, like any other research team members’.   Create an environment that allows everyone at the table to ask tough questions.   Through discomfort, we can create change.
• #7: Now, having said that the patient-researcher partnership should be organic, there are absolutely things that you can do to help facilitate their involvement in your research. I would also point you to the repository of resources shared with me online from 80+ patient partners and researchers from across Canada and the US: https://sites.google.com/view/howtoengagepts/how-to-engage-or-not But to summarize some high-level ideas: Ask for their input – and how they can best provide that input – throughout the project as much as possible. Budget for their involvement. This isn’t just reimbursing for expenses. It’s also considering and discussing with them compensation for their expertise. For more on this: https://pxjournal.org/journal/vol5/iss3/2/ Being flexible in when you meet, where you meet, and how you meet Multiple partners, as diversity of voices is important and one person cannot speak for an entire group. Assign a team member to liaise with them, and maintain frequent contact. Meet regularly and frequently to maintain momentum and develop relationships Offer prep such as research training, etc. to make sure they feel welcome and comfortable. They have skills beyond being patients. Keep dialogue open to invite use of other skills. Regular feedback on the positive differences their contributions made, and to celebrate the little victories – because research can take a long time to bear fruit.
• #8: I want to leave you with two things. First, a call to action.   Sometimes, caught in trying to get the right resources, the right methods, the right analyses, we forget the simplest yet the powerful effects of that human connection.   So when we leave here today, think of a person or two or three that perhaps have indicated interest in learning more and in helping more. Ask them to partner with you, and I promise you that you will be surprised at how many will want to help.
• #9: Lastly, a quote from a recently published article: https://onlinelibrary.wiley.com/doi/pdf/10.1111/hex.12807 Thanks very much for reading my talk! If you have any questions or comments, please get in touch: bryn.robinson@horizonnb.ca Twitter: @brynphd