Integrating the Patient Voice in Health Research: The What, Why and How

By Adem Lewis / in , , /

it’s now my pleasure to introduce today’s presenter, Colleen McGavin. From lived experience as a cancer patient and caregiver to her elderly parents, Colleen was inspired to become involved in efforts to improve Canada’s healthcare system. This commitment eventually led her to become involved in health research. As an advocate for patient and family-centered healthcare, a supporter of patient engagement in health research, and a patient advisor to various regional and provincial health care authorities, Colleen has worked with the Patients and Partners Patient Voices Network, Doctors of BC, the BC Ministry of Health, and the Michael Smith Foundation for Health Research. She’s also an active member of various health research teams in the roles of knowledge user, collaborator and co-investigator. Colleen’s dedication was recognized nationally in 2016 when she was presented the Partners in Research Ronald G Calhoun Science Ambassador Award. She presently serves as the Patient Engagement Lead for the BC SPOR Support Unit, a multi-partner organization created to advance patient-oriented research throughout BC. Colleen has kindly offered to share her knowledge with us today and we look forward to her insights and advice. Welcome, Colleen! First of all I just want to thank you, Diana, for that that great introduction and also for inviting me to present as part of this webinar series. I’m particularly excited and happy to see the marrying of the ideas of “knowledge translation” and “patient engagement” and for me, patient-oriented research is where the two fields intersect, and I hope you’ll all agree by the end of this webinar. So, I have three goals for this presentation. The first one is to define some key terms, starting with “patient,” and then moving on “patient engagement” and “patient-oriented research.” I think I just need to pause around the word “patient.” We define it here as people with lived experience of the healthcare system and when we use the word we automatically include informal caregivers, like family and friends, and it’s often necessary to acknowledge that not everybody likes the term “patient,” so some people prefer terms like “consumer,” “client,” “people with lived experience,” and so on, but I always encourage people to just substitute whatever term resonates most for them as i go through the presentation because I’ll be consistently using the term “patient.” And we’re going to learn about patient engagement and patient-oriented research, especially as it’s viewed, or how those terms are interpreted within the context of Canada’s strategies for patient-oriented research. And then Iweant to talk about why patient engagement is important, and finally to discuss how to get it right… and actually, I have to add a little bit there: how we’re trying to get it right here at the Support Unit. I want to acknowledge that while there’s lots of anecdotal reporting on the value of patient engagement, how it looks, positive results that come out of doing it–there’s not a lot of rigorous evidence yet around what works and what doesn’t. However, my role at the Support Unit is fostering the practice of patient engagement in research. Let me start with a little bit about Canada’s strategy for patient-oriented research. This first part of the statement about what is SPOR gets at the heart of what SPOR is all about: ensuring that the right patient receives the right intervention at the right time. Now, as a patient it was a bit unnerving to me to find out that this doesn’t necessarily happen all the time. I started out with implicit faith that my care providers would all be up to speed at all times on the latest information to guide their practice and their advice to me, but over the 10 years or so when I was dealing with cancer I eventually learned that that was actually pretty naive. This statement comes from a backgrounder for the SPOR initiative that CIHR has put out, and it says that up to fifty percent of patients do not get treatment of proven effectiveness, and up to twenty-five percent get care that’s actually not needed or potentially harmful. So it was a bit unnerving for me when I first read that statement. There’s a second part of this statement and it outlines the proposed solution. The words “with” and “by” are important here because typically research is done “for,” “about” and “on” patients. In the world of researchers, healthcare providers and health system decision-makers are the groups that come to mind when thinking of knowledge users, but it’s important to note that patients and families are included in this statement as well. So why was a new strategy needed? Well, Melanie Barwick did an outstanding job of outlining the challenges in her webinar, called “Getting to Impact: Why Knowledge Translation Matters to Researchers,” which is also part of this AllerGen NCE series. Simply put, she says that too many discoveries sit on shelves in journals and books and she quotes some statistics that I’ve heard of before. For example, that it takes an average of 17 years for research evidence to reach clinical practice, and the second one was that only fourteen percent is actually believed to make it into daily clinical practice. Again, rather alarming statistics and as a patient and as a taxpayer, I think we need to do better. So going back to the proposed solution, we think of it as a new partnership. So the point of research is to produce new knowledge for those who need it, and that includes patients, care providers and health system decision-makers, so it makes logical sense that the research to be done should meet the needs of those knowledge users and involve them in the research itself. So a process, I’m sure you’re all familiar with the term, called “integrated knowledge translation.” I just want to dwell on this idea of patients and how they are knowledge users too. Just to stress the point, I guess: there’s a lot of effort that’s been put into promoting patient self-management, especially when it comes to chronic health conditions like diabetes, congestive heart failure, chronic pain, asthma and arthritis. Patients are encouraged to take responsibility by, for example, eating healthfully, exercising, controlling stress and so on, and in this way patients become partners with their care providers in taking responsibility for the health and well-being. So patients need information about what is healthy for them, given their particular circumstances. For example, is it better to exercise or lay off when someone’s arthritis is acting up? What’s the best diet for someone dealing with type 1 diabetes? Is exercise safe for someone with COPD? What evidence is there that medical marijuana can alleviate chronic pain? Also, there are many situations where decisions about care for an individual person are not straightforward. I certainly learned that in my experience with cancer. Each treatment option comes with its own set of risks and rewards, and patients and care providers have to work together to make informed, shared decisions that respect an individual’s needs, values and preferences. You know, total knee placement may hold promise of a cure for someone suffering from osteoarthritis, but how does the patient feel about having surgery? What’s the downside of taking statin drugs to control cholesterol, and what are some of the other options? Is it safe not to take antibiotics when someone has an uncomplicated infection? So now I guess I to get into what the definition of patient-oriented research is, because when people hear the term they often think “Isn’t all research patient-oriented, insofar as it’s for the benefit of patients?” But here we’ve we’ve got three criteria criteria, and I want to stress that for a project to be thought of as patient-oriented research, and supported by our Support Unit, for example, it has to meet all three of these criteria. The first one is that it’s research conducted in partnership with and by patients, researchers, healthcare providers and health system decision-makers. The project should focus on priorities that matter to patients, so the priorities could come directly from the patients, or they could come from the research community and be endorsed by patients. And ultimately the research has to aim to improve healthcare systems and practices. Now I’d like to move on: obviously, then, patient-oriented research requires meaningful and active engagement of, among others, patients. So we have a definition of patient engagement that we use in the SPOR world: it’s “meaningful and active collaboration in governance, priority-setting, conducting research, and/or knowledge translation,” and I’d like to break that down for you, just have a better understanding of what it means. The first part is about “meaningful and active.” What does that mean? Well, in the words of one patient partner, “It’s the feeling that you’re having an impact, that your voice and perspective matter and can influence decisions.” Here we’re referring to decisions related to the research project itself. The SPOR patient engagement framework has some guiding principles. I’ve listed them here, and you can look them up online if you’d like more of a description of each of these, but I think you can see that each one of them speaks to this idea of meaningful and active collaboration. And I do want to stress that patient experience complements researcher experience; it doesn’t replace it. So it’s not as if we’re saying patients take over the research, but rather work in partnership with researchers and others. Then moving on to the next part of the definition: some of you may be familiar with this concept of a spectrum of engagement, and as you as you move from left to right, people have increasing impact on decisions made. This spectrum comes from the International Association of Public Participation, or IAP2, and as you can see, “collaborate” is high on a scale of impact. I would say that within the realm of health research, at this point in time, anyway, this is aspirational. Not all engagements are at this level. We often talk about empowering patients or working collaboratively, but in fact many engagements are still at the consult level. Which is fine; not everyone is ready to jump into the deep end right away, but moving engagements more towards the right is part of the culture shift that needs to happen, and something we’re working on at the Support Unit. It talks about governance as well; so, this is just meant to illustrate a typical governance structure. We often concieve of it this way, as a hierarchy, but the structure here is not meant to represent any particular organization. There’s our working definition of governance. Governance refers to all voices that go into decision-making about policy, funding allocation, and operations. Now usually we think of governance within the context of organizations and not so much within the context of an individual research project, but some projects and research programs are large and consist of a number of working groups and committees. Here the icons of people represent the idea of patients you might have on each committee. The roles for patients are different within the realm of governance. The patient partners are often called to draw upon other skills and knowledge, not just their patient experience. Now in an article that I’ve noted there on the slide, called is “Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment,” patients who have been involved in governance describe their roles as that of the creative outsider and the free challenger. They said that they felt freer to think creatively and challenge assumptions because they weren’t pressured by being peers or employees, or by virtue of having to represent institutional views. The role of passive presence is kind of like, I think that is kind of like the picture of the Queen: patient presence reminds others what this is all about, keeping the discussions patient-centered vs system centered. I’ve often heard from healthcare and research partners that having a patient at the table changes the entire conversation. Next, the definition lists “priority setting,” and the question becomes: whose priorities? So of course traditionally in research it’s been researchers who have set the research agenda. More and more so, I think that the health system decision-makers, those who have responsibility for policy and funding, want to be involved in priority setting–and that’s certainly understandable. And then we have the healthcare providers and it’s extremely important to think of their priorities because they reflect their experience on the front lines of healthcare, and I would mention that SPOR is seeking to build capacity within this group to do more patient-oriented research, and we have a training and capacity-development lead working on this. But what about patient priorities? I’ve got this slide which I use just to illustrate a case in point. The article of the research that was done that backs up what you’re seeing on your screen was done in 2000. It was reported in 2009, which is, you know, getting fairly old, however, I’ve heard it quoted in several places recently so I don’t know how much has changed. But again it’s just mainly to illustrate a point. In this study, only nine percent of patients wanted more research on drugs related to osteoarthritis, yet over 80 percent of randomized control trials in patients with osteoarthritis of the knee were drug evaluations. So it illustrates that disconnect between the priorities that matter to patients and the priorities of the research community. And that’s what we’re working to change. The last part of the definition talks about patient engagement in actually conducting research and in knowledge translation. This illustration shows the steps in a research lifecycle. It starts with identifying and prioritizing research questions. Izabella Scelest is a research facilitator at the College of Medicine at the University of Saskatchewan, and she developed a document that outlines roles for patients at all phases of the research lifecycle. Now we share this document with researchers here in BC and I’m finding it very useful, and if you’d like a copy it’s available on our website under “Resources.” Anyway, Izabella lists literally dozens of ways patients can we get involved, and I’ll highlight just a few. In the design phase, patients can co-develop the patient recruitment strategy; they can review and comment on proposed questionnaires and data collection methods. In the development of the grant proposal, patients can define outcome measures that are important to patients, like quality of life. In the preparation for execution of the study, patients can assist with writing patient information and consent forms. During the data collection phase, patients can actually gather the data by conducting peer interviews and focus groups. When analyzing and interpreting data, patients can be consulted to determine if they understand and interpret data in the same way as the research team. When it comes time to disseminate the research results, patients can advise on different avenues; they can co-author manuscripts, newsletters and identify other appropriate information outlets, and they can actuall jointly present the findings with researchers at conferences and so on. With regard to implementation, patient involvement can increase the likelihood that results of research are implemented by adding validity to the findings. And all throughout, patients can help with monitoring and evaluating the research process. So i just like to start to summarize and deal with the question of “Why patient engagement?” It started with the moral argument, 20 or 30 years ago really, that patients have a right to be involved in publicly-funded endeavors that affect them personally. The second reason speaks to what I’ve been talking about a lot up to this point: the need for greater impact on policy and practice change. The third one is what we call the relevance argument. So as knowledge users, patients know what matters to them and which treatments and therapies are most likely to be acceptable to them. And then there’s the quality argument: patients bring a unique perspective that complements scientific and academic expertise. And finally, as I mentioned before, there’s lots of anecdotal evidence to suggest that it has benefits, all kinds of benefits, to both patients and researchers, and one that I think it’s particularly noteworthy here as part as part of this webinar series is what I’ve read about what researchers have said around how patient engagement has made them much better communicators– in other words, much better at translating their research results in such a way that knowledge users will find them understandable and usable. So I’d like to just mention how we’re working to support patient engagement at the BC Support Unit. Our activity falls under three areas. The first one is recruitment: where do you find patient partners and others willing to work with patients; so it’s not just a matter of finding the patient, but all of the researchers who are interested in doing this and the other stakeholders as well. Training is a huge focus. How do we prepare team members to be successful? Upfront, any kind of orientation to a research project, and ongoing throughout, as patients take up different roles throughout the research process, you may need to provide mentorship or training to patient partners to enable them to do their jobs. For example, if you want patients to do peer interviews or lead focus groups they may need some training on how to do that. If you want them to help with data analysis or seaming of qualitative data, they may need a little bit of training on how seaming is done. And then finally support: what kinds of ongoing mentorship and support are needed? This is a wide umbrella term; it can include everything from the coaching we provide to researchers to help them to develop the patient engagement plan, but it can also include things like arranging meetings, doing evaluations, handling feedback. It can include things like providing reimbursement for out-of-pocket expenses like travel or even compensation for patient partners. It can also include creating safe spaces for teams to meet and interact. This is going to be my last slide and it kind of relates to what Melanie Barwick was talking about with developing a knowledge translation plan. Similarly, we work with researchers to develop a patient engagement plan. Often my relationship which researchers begins with an email from someone or an inquiry through our website that says “I need a patient for my study,” so then we enter into what I call a coaching conversation where we go through these types of questions before we begin the recruitment process. So by asking these kinds of questions it helps people to see that is more than just signing up a patient and putting their name on a grant application, because perhaps it’s required, without knowing a lot about what that exactly entails. So the questions are intended to get them thinking about what else is involved, in order to not only recruit that patient partner but to support them on an ongoing basis. And I won’t read out all the questions but I will leadleave it there. So that concludes the presentation part and now I’m open to your questions. Colleen, thank you very much for highlighting for us the valuable role that patients can play in health research & for your well-informed insights into the ways in which researchers can most effectively go about meaningfully engaging patients in their projects and in their knowledge mobilization efforts. i think almost all of us to a person on this call believe that engaging patients in our research or knowledge mobilization efforts is extremely important, but we feel like we’re looking through a glass darkly in terms of how to best do this and your presentation today has really provided some enormously valuable clarity and insight on strategies and techniques, and conceptual frameworks around how to build an engagement strategy that is comprehensive, sensitive and effective. So, we really appreciate that. At this time, I’m going to now speak to our participants and invite them and encourage them to take advantage of your willingness to respond to some questions. So please feel free at this time to leverage Colleen’s expertise by asking questions and seeking her advice in relation to any challenges or questions that you may have in relation to your own research or in relation to that of a team you are involved in, or something that you’re planning to apply for in terms of an upcoming grant. I’m going to jump in, Colleen, with a question for you to kick things off. Thinking of some of the most successful examples that you witnessed of patient engagement, what are the characteristics of the initiative or the project that really lend themselves to engaging patients effectively and making that project a successful initiative at the end of the day, from the patient’s perspective? Great question, thank you. Some of the characteristics of really successful engagement are, first of all, early engagement; so, bringing patients in early in the process, preferably before the research question has even been identified, but certainly bringing the patient in when the proposal is being developed and involving in the patient in the development of the research proposal itself: making sure that the question is clear, the outcomes to be measured resonate with patient partner. Another characteristic is clarity around roles and responsibilities and levels of engagement. Are you inviting the patient partner in merely to consult, which, as I stressed before, fine; that’s partly just where we’re at, but being clear around that. And what exactly are you asking them to do? If you’re just enthusiastic and not exactly sure of what the patient role will be because some research projects take years to complete, you can be honest about that upfront as well. Which brings me to another point: being realistic with the patient partner and making sure that they understand that research can take a long time, and there can be big gaps where it appears that nothing is happening. And so the importance of keeping in touch, having some device or way of keeping in touch with the patient partner on what exactly is happening. So, for example, if you’re waiting for ethics approval and this can take several weeks or maybe even months to complete, that you let them know that, so that they don’t lose interest of feel that you dropped them from from the project. The other characteristic of successful engagement, I think, is being realistic about what resources you’re going to need in order to do that. Unfortunately, a lot of teams don’t have a lot of money up front to pay for even small costs, like parking, mileage and coffee, and so on, for their patient partners who most often are volunteers in this. So giving some thought to how you might budget for or acquire these resources in order to support, to thank your patient partner. I think it’s really important. And there are some avenues to apply for funding for this kind of upfront work, so I would suggest that you look into whatever avenues or possibilities there might be for that. I think those are some of the characteristics of successful engagement. I guess I would add one more because this is fairly new and people are learning as they go, just being very open to keeping the lines of communication open, and always inviting feedback from the patient partner around how it’s working for them and how you might do things differently. I’ll just give you one small example of this. I am a patient partner on a four-year project n with funding from CIHR. It’s a large project and there are probably 30 or 40 members on the research team. Other than Victoria, the principal investigators are in Vancouver. The meetings are held in Vancouver. The main way I attended meetings was by teleconference, not by webinar where we could see one another; it wasn’t video conferencing; it was telephone conferencing. The telephone quality, the sound was very poor. People that used a lot of technical language and acronyms and jargon and so it was really difficult to follow the conversation, but I was able to speak to the to the principal investigator about these. He was very very open to hearing my feedback and concerns and several changes were made, and they were able, for example, to find funding for me to come over to one of these meeting in person, so I was able to meet with the rest of the team members face-to-face. They also provided me with a lovely list of everyone who was on the team with a photograph, their name, their title, their background, affiliations and so on, so as conversations were happening I was able to say, “Oh, that’s so-and-so speaking; I understand their their role in this in this project.” And little things: they encouraged people to to say their names when they were about to speak, in recognition of the fact that someone was at a distance and couldn’t see them, so that constant feedback and openness to change and improve, is also I think a characteristic of successful engagement. Well Colleen, that’s such helpful insight that I think only people who have been on the ground doing this day-in day-out I could really sum that up so effectively; really what you’re saying is you know as scientists we often think about you know the only way we can get our grant through is to have a very robust methodology and some kind of novelty to our approach, and in terms of patient engagement that’s important from a research perspective so it’s scientifically credible, but there’s also all these human factors that we have to take into account in terms of enabling engagement of the patient and a communication strategy; it sounds like you need to have an upfront communication strategy and someone who can help you execute that as the principal investigator of a research team to make sure that the patients actually can follow along with what’s happening in terms of the entire project. So those are great tips. Marshall’s letting me know that we’ve got lots of questions now, so Marshall I’m going to turn it over to you to invite people to ask questions to Colleen from the floor Very good, thank you Diana. We have about four or five written questions and someone with a raised hand so I’ll convey the questions in the order they were received, and I’ll start with a blanket apology for any name mispronunciations. The first question comes from Fatima Alroubaiai, and her question is: “How does patient engagement in health research differ from patient engagement in improvement?” That’s another great question and a subject of some debate here in BC. It was mentioned that Ihave been a volunteer with an organization here in British Columbia called Patient Voices Network, and I started out with that organization involved in healthcare quality or health quality improvement initiatives, so I’m very familiar with what that looks like and the approach that’s taken with quality improvement; and then eventually my volunteer work led me to become involved in research and part of research teams, so I think i have that perspective on on the differences. And we’re now engaged in collegial debate with Patients Voices Network around what are the similarities and differences between patient engagement and quality improvement versus health research. I’m really glad you asked that question, because from my perspective, with my experience, I actually don’t think there is a lot of difference. I mean, there is a difference in terms of quality improvement initiatives tend to happen over a shorter period of time; that’s one of the big differences: when you’re asking a patient partner, a volunteer, to commit to a quality improvement initiative it tends to run for anywhere from several weeks to possibly a yearor around that amount of time, where the research project, as I mentioned before, can spend several years and have big gaps in between. So that for me is one of the major differences. When you are a true patient partner in health research, you are not a study subject, and so you are part of the research team at whatever level has been determined, and as I said before we’re looking towards getting people up towards that “collaborate” level, and so I see more similarities than differences in terms of patient engagement in health research and quality improvement. If people are thinking about patient engagement in health research as “I’m going to have a focus group” and that’s the patient engagement: the patients in the focus group answering questions and so on, that is quite different because, in that context, if it’s part of the study and you are planning to to use the input from those focus groups as data as part of the study–of course, you need to go through ethics around that; you need to get consent from those patients as basically study subjects, giving you the data for your analysis: so that is a difference. You don’t do that in quality improvement initiatives; you don’t need to get the ethics approval and you don’t need to get consent for the patient’s participation in quality improvement. OK, very good; thank you. The next question comes from Jody Garner who asks: “Expanding beyond the patients themselves, how important is involving patients’ families, healthcare providers, etc.?” Okay, as I mentioned at the beginning, when I use the word “patient” it automatically includes informal caregivers, like family and friends, and again from personal experience both as a patient and family caregiver and in working with lots of patients who are really representing more of the caregiver perspective than the actual lived experience of the condition, we just kind of lump all of those together. So for example the four-year study that I am on has to do with heart failure. I didn’t personally have heart failure but was a caregiver for my father who died of heart failure, so my perspective on the study and what I bring to the study is from the perspective of a close family member who was a caregiver for someone who died of heart failure. The second part had to do with beyond that grouping, that grouping of patients and informal caregivers, to I believe it was providers… So the relationship there is that the providers are knowledge users as well and I think it’s very important especially at the priority setting stage to get these different players together to discuss priorities. There’s a an organization in the UK called James Lind Alliance; their work involves bringing together patients and healthcare providers to determine priorities and I think that’s very wise because we need both perspectives around what is feasible and important to study, not just the patient perspective. And I think that speaks to the comment I made earlier about how patient experience complements the other perspectives that are brought to the table, including that of care providers. Next we have a person with her hand up, so I’m going to unmute Ilona Hale. I hope you’re prepared to speak because i’m unmuting you right now; please go ahead. Hi, thanks and and, Colleen, thanks for the great presentation: very interesting. My question is: you you touched on it in answering an earlier question about ethics, and I am fairly new researcher and I am trying to involve my patients a lot in the research but everytime I have a sort of a feeling like, “oh, I’d like to check back or do another iteration. Doing the formal process of putting in a new ethics application to do another check back seems like a bit of a barrier. But when were going through the presentation I thought, “yeah, if they were part of the research team it seems like it’s be much easier to just say ‘what do you think of this?'” but I’m wondering what are the ethics implications for having somebody on your team? How does that work? Well, generally it is believed and I think this is the position at CIHR and its certainly what I’ve seen universally, is that when patients become part of the research team itself, and so part of shaping the direction anywhere along that lifecycle or, ideally, throughout the entire lifecycle, it is not necessary to get ethics approval for their involvement in that respect. However, if you need to go out to–and very often do need to go out to–because we run into this problem that one or two; maybe you have more than one patient, and actually we advise that you have at least two involved on the team itself, their perspective, their experience– so, my experience caring for my dad, cannot represent the experience of all caregivers or all heart failure patients, obviously. So it is necessary to go out and and have more participants, more people in focus groups, more people completing surveys, more people providing those data points for the study to measure the outcomes that you’ve determined you need. So I sort of see it in two separate boxes or squares: you’ve got the patients on the one hand who are part of the study team; ethics is not required there. But if you do have to reach out and get that data from a larger group of patients with that lived experience then you will need to get the ethics approval and consent to interview them or for them to participate in the focus group or whatever. That makes sense; thank you. The next question comes from Ramaya Barry, who has a comment and a question so I’ll read them both: “Thank you for the informative presentation. It was striking to see the mismatch of research priorities. The presentation is focused on the researcher clinician patient engagement, but is there a role of science policy and health policy that drives this mismatch? Did you get that? I did get it and I’m just thinking about it in relation to my experience here in BC, where the provincial government or Ministry of Health which as a co-funder has provided most of the matched funding for the BC Support Unit here in BC, does have a large voice in determining the priorities for our Support Unit. So we’re talking about research in different pillars, if you will; the example that I gave of the osteoarthritis and where the money was spent, and so on, is one example. I think you’re talking about research related to health system policy. So we are still wrestling with this in BC. I think I don’t have a full answer this; we have certain target populations and we know of certain populations in BC that are using a large proportion of the resources, of the healthcare dollars, in BC, and I think that our government would like to see more research done in those particular areas, and will support research done in those particular areas, and is trying to shepherd researchers into out looking at those particular areas as a priority. I’m just speaking personally, but I do think that is important to recognize that and to dovetail that with the priorities of researchers. I don’t know center of your question but those are some thoughts around that. The next question comes from Cigdem Sahin who wrote: “thank you for the illuminating presentation. What do you think about the role of mobile health in patient engagement research, and what are your future strategies for mobile health”? Mobile health: when I hear that term, I think immediately of apps on the phone, or the ability of the patient to monitor let’s say their their condition, whatever it is, or get assistance with decision-making. I’m sure there’s a plethora of ways that phrase “mobile health” could could be interpreted, and I have seen some examples of this and and I think they’re very exciting and innovative and have great potential for helping patients to be partners in their care, self-managing conditions and maintaining health, and so on, but I don’t necessarily see them as examples of patient-oriented research, as I’ve defined it in this presentation, unless you had patient partners who were part of the team developing whatever application of mobile health you have in mind. So, patients saying this is an important feature, or this is an important adaptation of mobile health, this is how it should look and feel, providing input at every stage of the development of that mobile health application. So there’s the difference between being part of that team that initiates it, and develops it, versus the user of a mobile health application. I hope that’s clear. Next we have a question from Linda Warner: “What do you think of involving children aged eight in focus groups with the parents for a pediatric longitudinal cohort study?” I think i could only give a personal opinion about that, as I have not been involved in any project like that and this is purely personal. So you’re saying involving children aged eight along with their parents in in a focus group. To me, it would largely depend on a number of things: What was being asked? Who developed the questions? Have you created a safe environment for those children to interact? Those kinds of things. Hopefully the parents are involved in the development of the questions. They’re alongside their child; the questions are appropriate, and you’ve really given some consideration to whatever risks. I think it would depend a lot as well on on what the subject matter is of the focus group; is it potentially traumatizing for a child to speak about whatever you’re asking them to speak about? And how are you going to mitigate that risk? So those are some of the thoughts that come to mind. That covers it for outstanding questions; hopefully some more will trickle in, but at present the there are no other questions from our participants. Thanks so much for that. Colleen, I’ve got a couple of other questions for you. I think we don’t like to focus on the negative, but what are the major blind spots of researchers trying to engage patients in research. What are the things they just don’t even know they don’t know, that cause their project not to be as effective in engaging patients and not taking advantage of the opportunity to its optimal capacity. What are the things that are barriers to success that you see researchers stumbling up against? Just sharing a shortlist, the top five things that you think you see people doing that they shouldn’t do and what should they do be doing instead? I’m just jotting down ideas as you have been asking the question, and the first one that came to mind was not recognizing how much this takes in terms of resources, particularly time and possibly money. Time often translates into money, because it’s got to be somebody’s responsibility to recruit, train and support the partners that have decided they want to go forward in this kind of partnership with patients in the public. So that’spitfall number one, and one the second one that came to mind is if there’s not true buy-in and if people are doing this because they have to; you know, they want to apply for some sort of grant or funding that requires patient engagement, but they they don’t actually believe in it, or see it as just a problem that they have to overcome, that they have to provide in a tokenistic kind of way, can be a huge blind spot or barrier. I did say on the other hand that people sometimes people really buy-in on a gut level and they believe in it from an ideological point of view, and that’s ok: saying I don’t know what I don’t know yet, but having an open attitude and just saying “I know that this is going to take some of my mental energy and time to overcome the little hurdles that we encounter along the way,” I think is a way that you can mitigate that, but those are the two big ones that came to my mind, is just not budgeting sufficiently and then really doing a check around whether you really buy into this and believe in it, and not that even if you may not know how to do it, being willing to have that open communication. Any other questions from the floor? We have a one person who’s raised her hand, and that’s Catherine Biggs, so Catherine I’m going to unmute you now; please feel free to speak. Great, I wanted to thank you for such an enlightning talk; you’ve given us some really wonderful pearls, with respect to communicating with patients to help them feel like informed and valued collaborators in all parts of the health research process. I was wondering if you have any specific pearls to help us communicate with involved patients when we experience setbacks in our research. When you experience setbacks in your research—are you thinking of setbacks in terms of miscommunication or misunderstanding or that that kind of thing, or are you referring to a setback in terms of maybe you didn’t get ethics approval now have to reapply or something like that? It could be sort of a logistical setback, or maybe the midphase results we’ve been getting back aren’t as encouraging as we were anticipating and now we have to kind of rethink the project, or it’s slower than we thought it was going to be: that sort of thing. I think it all comes back to clear communication. So as part of the orientation to your project you might think about actually addressing the question upfront that research doesn’t always go smoothly; it doesn’t always progress from that one step to the next, to the next, to the next. But there may be setbacks, switchbacks, whatever, along the journey and if you have that conversation upfront and let people know that it could delay the timing of the research, that it could require meetings that one anticipated, that sort of thing, but always mentioning that you’re prepared to stay in close communication and always work in consideration of the of the patient partners’ schedule and time and so on, and just have that have that really open communication; not that you want to be negative in anyway, but that actually just is the reality of research; that these things do happen. I have one final question, unless there’s someone else on the system? The floor is yours. Thank you. So, Colleen, for our final question today, put yourself in the position of researchers trying to identify patients who would be appropriate and really able to contribute to the project in a meaningful way. What would you say are the top three criteria that researchers should apply to their filter when they’re interviewing patients who have an interest in being part of the research? What what are the characteristics of patients who really are the most valuable contributors from that perspective on a team that has research as their end? Well, two come to mind immediately. The first is that you should look for someone who actually has lived experience in the area that you’re researching. Not that that person is going to able to represent all people who have experience; one person’s experience cannot represent all, but having lived experience in the area of research really is is very valuable, so looking for someone who has that lived experience. The second one is that I think you do need to look beyond for thisrole, for a patient partner to to be part of a research team, I do think that they need to have other skills beyond their lived experience. The first one that comes to mind is excellent communication skills, and that’s at all levels, because they’re going to be required to read technical information; they’re going to be required to communicate in written form, over email; they’re going to be required to express their views concisely at meetings and that sort of thing, so excellent communication skills, but also excellent interpersonal skills, because there will be times when things are not going to smoothly or where there it is a necessity to provide feedback, and so someone who is able to come forward and talk openly–and that’s certainly important for all all members of the research team. I also know of teams where patients bring a wealth of other skills that are very valuable to the research team, and that could be everything from those communications skills I talked about to other practical kinds of things. I know of one group where one of the patient partners used to be a journalist. I guess it comes back to communication, but his writing abilities have proven to be very valuable to the team. So looking for someone with lived experience but also all of those communication skills are are hugely important. That’s terrific; thank you so much. Can I throw in one more? You also have to be clear about the commitment you’re asking for and make sure that you find someone who is able to make that commitment. And of course it has to be a two-way street, so, you know, being realistic around what time commitment you’re looking at, and whether or not that person would be able to commit to the project at the intervals that you anticipate, but also over the life of the project, that’s really important, to. Excellent. Are there any other outstanding questions? The person asking the question is Sandra Vanderkay. Sandra, I’m unmuting you now so please feel free to speak. Hi Colleen, thanks a lot for a great presentation thought-provoking. I’m just concerned about this idea of selecting patients who have it obviously viable or advanced communication skills, and of coarse I understand why you would want that, but I also am concerned that that biases the patient voice in the research process, so we’re prioritizing a certain type of patient over another patient who could inform the research process in very different ways, and so I struggle with that. That’s a really important question, and unfortunately it would be difficult to give a really short answer to that question, but i just want to acknowledge the importance of what you’ve just said, and I’ve been fortunate to be witness to a number of research teams that engage with what I call “voices less heard”: people who we don’t typically engage with and who it may be harder to bring them into that process, and I think the short answer is that, first of all, those individuals often have far more by way of experience and ability to communicate and things to say than we think, and that the key is in creating an environment that is safe and that is conducive to them being able to say what they need to say. Often it takes more time and often it requires more face-to-face, in an environment where those individuals are comfortable, in their environment, at their time, and so on, and that’s kind of a short answer but it’s a very important question. Well thank you Sandra for asking that question and Colleen for contextualizing that, and you’re right we don’t have time for much more discussion today; it’s a topic that deserves much more discussion and collaboration and I think we could still learn an enormous amount about doing research in this area but it is approaching 2 p.m. and it’s my job at this point to thank everyone for attending and for their thoughtful questions and, Colleen, for your terrific responses. We hope this was a very useful exchange for everyone involved and again thank you everyone for taking part in this webinar. Thank You Colleen for sharing such a wealth of valuable information and insights with us today about the ins and outs of state-of-the-art patient-oriented research strategies. It’s an enormously complex area and I think that the key message you left with us is that we need to explore multi-faceted strategies and provide safe access for this innovation in the research process. So we hope to continue the conversation with you in a couple of weeks time. Thanks everyone for participating and have a great afternoon.

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