Patient-oriented research– it’s personal: two BC SUPPORT unit patient partners sharing their journey in patient-oriented research

Plain language summary

Patient-oriented research is becoming an established way of healthcare research in Canada. It is supported by the Strategy for Patient-oriented Research (SPOR), launched by the Canadian Institutes of Health Research. One core element of SPOR is the SUpport for People and Patient-oriented Research and Trials (SUPPORT) Units, which is tasked to promote and facilitate patient-oriented research across provinces and territories in the country. Under the strategy, patient partners are welcomed and engaged as equal team members from the beginning to the very end of health research projects to share their lived experience with a medical condition and their interactions with healthcare systems. In this Commentary, two patient partners reflect on how they worked hand-in-hand with the BC SUPPORT Unit to co-develop activities to support patient-oriented research. This was achieved through mutual understanding, building trust, and staying true to SPOR values. Through a variety of roles - including serving on committees and working groups, initiating research projects, and participating in knowledge translation activities like webinars and conferences, the patient partners and the Unit grew stronger together. This commentary exemplifies how a national health research strategy can foster alliances, where individuals within an organization encourage and empower each other to drive progress in health research.

Abstract

Background

Patient-oriented research is becoming an established mode of healthcare research in Canada. It is supported by the Strategy for Patient-oriented Research (SPOR), launched by the Canadian Institutes of Health Research. One core element of SPOR is the SUpport for People and Patient-oriented Research and Trials (SUPPORT) Units, which is tasked to promote and facilitate patient-oriented research across provinces and territories in the country. Under the strategy, patient partners are welcomed and engaged as equal team members from the beginning to the very end of health research projects to share their lived experience with a medical condition and their interactions with healthcare systems.

Main body

In this Commentary, two patient partners reflect on how they worked hand-in-hand with the BC SUPPORT Unit to co-develop activities to support patient-oriented research. This was achieved through mutual understanding, building trust, and staying true to SPOR values. Through a variety of roles - including serving on committees and working groups, initiating research projects, and participating in knowledge translation activities like webinars and conferences, the patient partners and the Unit grew stronger together.

Conclusion

This commentary exemplifies how a national health research strategy can foster alliances, where individuals within an organization encourage and empower each other to drive progress in health research.

Background

Patient-oriented research is about engaging patients, their caregivers, and families as partners in the research process.

- Canadian Institutes of Health Research (CIHR) [1].

In 2011, CIHR launched the Strategy for Patient-Oriented Research (SPOR). A key component of SPOR is the SUpport for People and Patient-Orientated Research and Trials (SUPPORT) Units, which help implement and sustain the strategy across Canadian provinces and territories. British Columbia’s SUPPORT Unit has been providing resources and training opportunities for researchers and patients to advance patient-oriented research since 2016, inclusive of engaging patient partners as authors in research publications such as this one.

As patient partners, people with lived experience and members of the BC SUPPORT Unit, we advocate for patients to take ownership of their health, actively participate in their healthcare, and be equal partners in health research. In this Commentary, we share our stories of partnering with the BC SUPPORT Unit to advance patient-oriented research in BC, highlighting our contributions, the impact of our engagement, and the lessons we have learned along the way.

Main text

Journey in patient-oriented research: Sunny Loo

I have been a patient partner with the BC SUPPORT Unit for the past nine years, engaging in various roles in workshops, committees, advisory and planning groups, and research teams. Currently I have stepped away from the BC SUPPORT Unit to serve on the board of Michael Smith Health Research BC, within which the BC SUPPORT Unit resides. I am retired and enjoy a slower pace life with my wife and two puppies.

January 2008– that was when my world changed, when I transitioned from being a healthcare provider to a healthcare recipient, from someone developing supportive solutions for patients to a patient seeking solutions. That was when I first experienced symptoms of my illness which was diagnosed three months later as granulomatosis with polyangiitis [2, 3], a rare form of vasculitis - a chronic autoimmune disease. I was lucky. Not more than 40 years earlier, my survival prognosis would have been less than 6 months. Although I will never be disease-free, I am now almost seventeen years later symptom free. Luck aided by tremendous healthcare research has produced treatments allowing people like me who live with chronic illnesses a chance for hope, quality of life, and a future. How health research changed my life and the lives of so many other patients is why I am a patient partner with the BC SUPPORT Unit.

I was introduced to the BC SUPPORT Unit in 2016, while serving as a patient partner on several regional health authority councils. In that role, I drew on my background in pharmaceutical sciences and my lived experience to advise on medication and treatment safety for patients - a responsibility I continue to uphold today. This experience showed me the importance of patient voices even amongst seasoned health professionals.

The BC SUPPORT Unit caught my interest for its focus on patient-oriented research and their active seeking of patients as partners in various projects. With my background in healthcare and as a patient living with a chronic illness, I felt that volunteering in a couple of health research related projects with the BC SUPPORT Unit would be a good fit. A couple of projects turned into many innovative and ground-breaking programs over the span of nine years. As a healthcare professional and a healthcare recipient I had always believed in the importance of health research. However, it was through participating with the BC SUPPORT Unit that I realized the many key roles people with lived experience whether they be patients, their family, informal caregivers, or even the community, can actively play in health research, and how they can be truly equal partners.

Over the years, the BC SUPPORT Unit has initiated, partnered in, and/or supported many projects, programs, studies, and other activities to meet the SPOR mandates. Much effort went into recruiting people with lived experience to be patient partners with the Unit. As patient partners, we are at liberty to participate in engagements that interest us or align with our experience. These opportunities may be within the BC SUPPORT Unit, such as advisory councils, committees, and working groups. In addition, we can advise on or partner in research projects initiated by external researchers or institutions, referred to us by the BC SUPPORT Unit.

My particular interest was in projects advocating for patients not only as a research subject but also as an active partner in health research playing a key role in study design, development, and operations. I took part in engagements encouraging patients to participate, and to ensure our contribution is recognized. I was active in several initiatives developing tools to manage and disseminate data to not only researchers but to patients as well. As I became more involved with the BC SUPPORT Unit, I found myself gravitating to opportunities involving the establishment of guidelines and procedures supporting patient-oriented research.

When I first joined the BC SUPPORT Unit as a patient partner, I had limited knowledge of health research. I am aware of studies focusing on more common diseases such as cardiovascular and diabetes, but with patients as subjects. Patients traditionally are passive participants in health care and in health research. Patient-oriented research, through the activities of the BC SUPPORT Unit strive to change this. By engaging with the SUPPORT Unit, I can contribute to patients achieving a more active role in their health.

The BC SUPPORT Unit worked toward establishing guidelines and procedures for engaging patients in more active roles. By doing so the Unit enhanced the understanding of how to work with patients, what roles patients can have in health research, what role patients want in health research, and how researchers can work with patients. I have learned that although patients have embraced patient-oriented research, many of us do not know how we can actively participate in health research process. To meaningfully engage in health research activities, patient partners require education on what role we can play, why we should participate, and how to engage.

As a patient partner I first had to educate myself on what health research entails. I did not fully understand the process nor realize all the ways patients can potentially contribute and lead. The many BC SUPPORT Unit programs, activities, and information materials showed me what health research is all about. My participation with research studies and researchers gave me a better understanding of the many steps that go into a successful study. It also showed me the bureaucracies and sometime tedious requirements constraining researchers. Most significant for me, I became more aware of what type of research is important to me as a patient. Through my engagement with the BC SUPPORT Unit, I learned that patients are not just passive subjects in health research, but we can be active partners, advocates, and decision makers, helping to shape research that directly addresses our needs. I learned that the patient’s voice is important to the vitality of health care and the effectiveness of our health system.

My experiences with patient-oriented research

Citizen science

People with lived experience, whether they be patients, their family, or informal caregivers, have so many stories to share and so much pertinent information to impart. Information that in the hands of researchers and care providers can contribute immensely to the treatment and care of other patients. When I was first diagnosed with my illness, its rarity meant a scarcity of information. With only a handful of patients diagnosed in Canada each year [2, 3], many general practitioners, including my own doctor, have no experience in dealing with all the nuances of my condition. The experience I endured, both from the disease and the difficult treatments, were noted by my doctors and included in a longitudinal patient study in which I was participated. However, I never had access to the information collected and did not know how that information was shared. Living with a chronic illness that affects my lifespan, quality of life, and my family’s quality of life, I needed to know how to manage the disease and how others like me are coping. I sought information on treatment options and available support. Having information allows me to feel more in control of my situation. As such I was excited by a study introduced by a research team from the University of British Columbia, referred to me by the BC SUPPORT Unit. This study, called Citizen Science (https://patientscientist.ca/), entails the development of a secured web-based portal by which patient can provide details of their lived experience (in this case pain and pain management, and living with long COVID) so researchers can incorporate this valuable and rich data to generate relevant research questions. I and several other patient partners were involved from the very start of the design and development of this portal, advising on types of questions to be asked, the portal’s appearance, ease of navigating, and most importantly the clarity of the language used. It was eye-opening to the academic team to realize that precise questions are meaningless if patients cannot understand them. As well, patient partners living with visual impairment provided valuable insights on font size, colour, contrast and background style, ensuring the portal is accessible and user-friendly.

The Citizen Science project is an excellent example of the synergy between patient partners and researchers. I learned from this project the importance of including multiple patient partners. Everyone provided their individual perspective based upon their own unique learned experiences through their occupation, health condition, and environment. Although including multiple patient partners may slow the process, the resulting contribution is much richer.

Innovation and technology can become obstacles for patient participation if designed with a purely academic focus. As patient partners, our insights helped shape a user friendly and secured application that collect valuable data for researchers to improve healthcare for other patients. As well, patients benefit by gaining insights from the collected data, allowing them to compare their experiences with others.

REACH BC: connecting patients with researchers directly

Another exciting initiative that I participated in is a program supported by the BC SUPPORT Unit called REACH BC (https://reachbc.ca). As a patient with a rare chronic illness, I understand firsthand the impact of research on my healthcare and treatment– especially because such research was scarce when I was first diagnosed almost 17 years ago. At the time I relied entirely on my specialists to inform me about available research opportunities, and participation was only possible if the physician recommended it. Finding studies that aligned with my specific priority was very difficult.

The REACH BC program is an initiative developed to help researchers and patient to “find” each other for research studies. My role as a patient partner in the development of this initiative was to aid in ensuring the design of the technology involved would not only cater to researchers’ needs but also support the needs of the patients. I and other patient partners were tasked to advise the developers on the challenges some patients may find navigating the technology, and to provide input to mitigate those difficulties. I was quite impressed by how much the developers heeded our input. However, it was also a learning for us patient partners regarding the complexity inherent with the development processes and the amount of time needed in the development of such programs.

As a patient partner, I was not involved full time with the project development but was “parachuted” in– many times after lengthy intervals. I needed to reacquaint myself to what had transpired during my absence, what had changed, and thus what we need to do next. A learning for researchers and for me was the importance of maintaining regular communication with patient partners during downtimes. This helped keep the project top of mind and ensured everyone stayed informed about its progress. Providing updates summarizing the current status and next steps was especially valuable in helping patient partners refamiliarize ourselves prior to re-engagement.

When several patient partners are involved and all of us having our own ideas and expectations discussions at meetings can be long and often take many turns. However, I found these discussions to have a positive outcome fostering options not considered by the researchers. As an example, initially the aim of REACH BC was to be a “simple” contact portal for researchers to better recruit volunteers for their studies. However, with input from patient partners engaged with the project, the platform design was modified to allow for greater access by patients. Now the platform allows researchers to seek appropriate patient partners, and for patients to seek out researchers and studies matching their specific interest. This makes REACH BC an even more valuable and robust tool for patient-oriented research.

Exploring patient-initiated research

As a patient partner at the BC SUPPORT Unit, I engaged in various initiatives supporting patient-oriented research. This experience deepened my interest in expanding patient involvement beyond traditional roles. Patients now contribute to study design, research questions, grant proposals, and decision-making [4]. Recently, I joined a ground-breaking initiative that exemplifies the future of patient engagement - research initiated or led/co-led by patients.

This ground-breaking project, initiated by the BC SUPPORT Unit Patient Council, is a study aimed at enabling patients to play a leadership role in health research. Through patient-oriented research we are being more included as part of the health research team, however there are those of us with the need to initiate research pertinent to us. The benefits to being able to lead our own research study include better understanding and addressing health concerns important to patients but may not necessarily be a priority for academic researchers. Being able to initiate our own studies is also a step further for us to take ownership of our health and health care. To understand better what is needed to support patients wanting to initiate research, the BC SUPPORT Unit undertook a study called the Patient-Initiated Research Assistance Program (PIRAP) to find answers and to develop processes [5]. This project was driven by the BC SUPPORT Unit Patient Council with patient partners, including myself, actively partnering with researchers from the BC SUPPORT Unit. As patient partners on the team, we fully participated in the study design and development. We co-created the interview guides, reviewed literature, determined recruitment requirements and processes, and participated in conducting some interviews. In addition, we took part in analyzing the data gathered, writing the final report, and presenting the results to the BC SUPPORT Unit executives and other interested parties. Most recently, my patient partner teammate and I co-authored a soon to be published article about the PIRAP Study [5].

The PIRAP Study identified the challenges patients face when attempting to initiate their own study. Traditional academic health research has in place an infrastructure that is simply not available to patients or communities intending to initiate their own research. However, these challenges can be overcome with training (e.g. University of Calgary’s Patient and Community Engagement Research (PaCER) Program [6]), and through partnership with researchers (e.g. through BC SUPPORT Unit and REACH BC).

This study in my view was successful, not just due to the results obtained but for what I learned from my participation. I learned about the bigger role patients can play in health research, I learned about challenges and obstacles to be overcome if patients are to initiate or co-lead studies, the value and synergy from partnership with researchers, and I learned about patience– patience dealing with the sometime slow pace of research work, and with each other as we learn to work together as academic and patient researchers. Patient initiated research is the logical next step for patient-oriented research. I look forward to being a part of this evolution for patient researchers.

My reflection

Since 2016, the BC SUPPORT Unit, now a part of Michael Smith Health Research BC, has launched many innovative initiatives, both large and small, to advance Patient-oriented Research. I have met many passionate patient partners who dedicate their valuable time and lived experience to improving health research, as well as forward-thinking researchers who embrace collaborating with patient partners. It is encouraging that federal and provincial health ministries are investing in the Strategy for Patient-oriented Research. However, challenges remain before patients achieve true equality as research team members.

The work by the BC SUPPORT Unit in Patient-oriented Research is successful in large due to the contribution by patient partners of our time, expertise, and experience. Our contribution needs to be recognized and to support this the Unit formed a working group to explore how to recognize and acknowledge the contribution of patient partners. BC SUPPORT Unit has its patient partner compensation/appreciation guidelines in place now for several years providing patient partners with honoraria and acknowledgement in line with how they wished to be recognized. I am very pleased to find a few other organizations have also adopted similar guidelines [7, 8]. As well, studies are being undertaken to see how patient partner compensation can be applied in other jurisdictions across Canada [9]. Unfortunately, adopting patient partner compensation still faces challenge. The notion that patients should volunteer their time unpaid can be a difficult inertia to overcome [10].

BC SUPPORT Patient Partners can volunteer or be compensated for their contribution depending on (a) type of engagement, (b) extent of time commitment, (c) expertise/experience required, and of course (d) patient’s choice. I have both volunteered for some meetings and short presentations, and I have been compensated through honoraria for participating in research projects and conferences. My position as a member of the Michael Smith Health Research BC Board of Directors is strictly on a volunteer basis and I received no stipends for that role.

Of course, patient partners do not participate for the sake of compensation. Patient partners are never paid enough for our time, expertise, and experience, nor do we have expectations to be paid so. However, patient partners do expect our contributions to be respected and recognized. The recognition of the value we bring to the table contribute to richer learning, bettering the chance for research success, achieving more practical and applicable results that focus on real issues, and potentially improving our health system.

Volunteering with the BC SUPPORT Unit connected me with others who share lived experience. I had the privilege of hearing their unique stories, yet deeply familiar stories. They shared their passion to improve patient care, their desire for greater control over their health, and their commitment to stronger partnership in health research. They also advocate for equality, diversity, and inclusion in how patients are being treated.

Patient-oriented research, and the work of the BC SUPPORT Unit, allows us to share our voices and be recognized for our contributions to improving health care delivery and the system as a whole.

Finally, for me, volunteering with the BC SUPPORT Unit and Michael Smith Health Research BC is more than just supporting patient-oriented research or securing a more equal partnership for patients in research, it is my way of “paying back” for the tremendous research that enabled my now living a healthier life.

Frontier and future– my journey in patient-oriented research: Lisa Ridgway

I have been a patient partner with the BC SUPPORT Unit for seven years, and served as the Co-Chair of the Unit’s annual “Putting Patients First” flagship conference in 2024. I’ve collaborated on 30 + research projects since 2018 and co-authored eight papers. In 2020 I was co-Chair of the Patient Partner Council, and I am now very proudly a research ambassador for patient-oriented research across British Columbia, across the country and beyond. It may sound dramatic, but patient-oriented research saved my life.

In this section of our Commentary, I want to braid together my lived experience, my time as a patient partner, and a vision for the future of patient partnership in health research under the mantle of the SPOR strategy. I can happily share my story, because after many terrible years of mental illness I am pretty well. Every patient partner has a compelling story. Some involve tragedy, some involve setbacks and stigma, some involve life-long injury and the heavy burden of a health condition or disease. But each story is a triumph, because it is being told, and being shared, on a health research team.

Personal context

My brother Mark died after we did two bone marrow transplants, because his blood cancer kept on coming back. As he said at the end, “I just can’t get a break”. Cancer killed him and it left me bereft, unmoored in spirit and body. It was a very long and protracted battle because he had an “indolent” disease, which was a death sentence. After Mark died, I was diagnosed with major depressive disorder and only survived because of my medical team and the support of friends and family. There were pills, and brain stimulations and ketamine and exercise and therapy. My psychiatrist, in a last-ditch effort to keep me from falling off the cliff, got me involved in research at the University of Victoria, and that led to a patient partner role at the University of British Columbia - I still collaborate with both places to this day. Now I give back to research teams what cancer failed to conquer, and that is the spirit of doing some good in a very bad situation. Fast forward the years since my brother’s death and I am– at present - on eight different research projects, on teams that range in size from three to thirty-plus researchers. My focus is mental health, because all health is based as much on the brain as it is on the body. I am a research ambassador for patient-oriented research across Island Health, across British Columbia, and across Canada.

What is patient-oriented research to me?

My theory about patient-oriented research is an equation. It is built on the concept of emotional involvement in research [11]. It can be cathartic for a patient partner to join a research team. To re-play, to re-live the experience of disease, or illness, or caregiving so that the research team can really know what it’s like. I believe that ultimately patient partners can change the course of research to and move it faster and further to implementation. In other words, move it as soon as possible from the laboratory bench to the bedside to then, if successful, to policy change. I call that part of the equation emotional involvement. The second part of the equation is “Scientific Method”, in other words the rigorous, evidentiary accumulation of fact leading to a conclusion. Testing of hypothesis and developing hard and hopefully (again) implementable science. If you add emotional involvement and Scientific Method together you get patient partners in health research. I am a mixture of emotional involvement and some knowledge– never enough– and a vast appreciation for the science involved. Patient partners in health research give something that can’t be measured. We give teams what happened when we took the pills, when we nearly gave up, when we hurt. Because if you are a patient partner on a research team, you singularly own your lived experience. On my teams, I consider it my fiduciary duty to translate that knowledge to the team.

Why patient-oriented research?

I am indebted to patient-oriented research for many reasons. It has given me pleasure and as importantly, it has given me purpose. But mostly I am indebted to it because I think, in the end, it saved my life. I am indebted to people like Dr. Paul Hebert, who was a visionary behind the SPOR Strategy. He once said health research should be “With the Patient and For the Patient” [12]. And now, health research can also be “By the Patient”, as my co-author has explained so well. When I found out Dr. Hebert was taking over the helm of CIHR, I sent him a congratulatory note. I wrote (in so many words) how grateful I was for his foresight and perseverance in founding the SPOR strategy. He wrote back to me and thanked me for being such a supportive patient partner. What a lovely human touch from a pioneer of patient-oriented research!

But what do I do as a patient partner? I’ve taken on loads of roles, including shaping a clinical trial to put more emphasis on patients, helping craft and draft ethics applications, jumping in with data review and analysis– learning the language of research (what exactly are “forest plots”?) in the process. There are loads of intersection points as a patient partner over the entire research cycle, from brainstorming ideas, writing the grants, participating in focus groups (or leading them) and, at the very end, pushing out the papers including my favourite part, the lay abstracts. There aren’t “horses for courses” - as a patient partner you play a role throughout the entire project. I’ve helped design, present and showcase short courses on the fundamentals of patient-oriented research and given many talks, virtual and in real life, standing proudly in front of students, academics, researchers, decision-makers and other patient partners on the magic that can happen when you fully engage us.

Early triumphs

In 2018 the BC SUPPORT Unit asked me if I wanted to attend a small conference in Vancouver, to learn more about patient-oriented research. It was a two-day gig, and now, almost seven years later, I still can’t believe my good fortune. At the right time, in the right place, with the right people is a very potent combination. However, at that time, I took individual responsibility and couldn’t put my legal training behind me. I stood up to everything and everyone, thinking it was my duty to be provocative. With other patient partners behind me, I became Co-Chair of the Patient Partner Council, won the best poster award for patient initiated research, got a few grants, produced and developed Canada’s first POR podcast (the mighty “SPORcast”), co-taught two short courses on POR at UBC, spoke at conferences and pushed hard. Eventually it wore me down and I suffered a relapse of my mental illness. I took too much on as an individual. The frontier of patient-oriented research proved too much, and I had to turn back.

Co-applicant SPOR Phase II

I am the Co-Applicant Patient Partner on the SPOR Phase II grant. From the moment I was asked to join the team to when we submitted the grant took over six months, and hundreds of hours of group effort. It was the best therapy imaginable. I could see the future and I could see that it had to involve patient partners in an even greater role in the organization. I wrote the “Patient Partner Statement”, a CIHR requirement, on behalf of the Patient Partner Council. I was beginning to learn that I shared a collective responsibility for patient-oriented research.

Co-chair putting patients first 2024

In 2024, I was the Co-Chair of the “Putting Patients First” 2024 conference, the flagship social and professional event celebrating patient-oriented research in B.C. Over five hundred people attended, the largest turn-out ever in seven years. I promised, across social media, that if you attended, you would be both excited and engaged. Under the guidance of a new Unit Director, the BC SUPPORT Unit reached out and welcomed patient partners to the Planning Committees for the events leading up to the conference and for the day itself. With savvy ability, our Program Director balanced the need for patient partner involvement with business acumen. The conference was very exciting and encouraging, with students, trainees, scholars and funders mixing it up with a blend of academics, clinicians and board members. It was exhausting and exhilarating and spoke volumes about the passion of the BC SUPPORT Unit and its employees. As patient partners, we were welcomed and feted. I left with my head held high and took strength from a collective vision of patient-oriented research being embraced far beyond my happy closing remarks. Looking back, none of these accomplishments are mine alone. They are the accomplishments of the BC SUPPORT Unit.

How to do patient-oriented research

How do I do patient-oriented research? Over the last seven years, I’ve learned the hard way, because I am a slow learner (despite the fact that the BC SUPPORT Unit has made it very easy for me!). Here are some of the best lessons I’ve learned:

Share your brilliant ideas

Galvanize your team. Don’t make a concession to mediocrity, or wait for the perfect moment. Once, on a very big team, I blurted out that I wanted time on every agenda for patient partners. And, from that day forward, for the last four years, patient partners hold the talking stick on the agenda for a good portion of the meeting.

Surround yourself with patient partners

I did not get where I am today without other patient partners by my side. I surround myself with a small, enduring group of patient partners who hold strong opinions and ideas. If my Finnish grandmother were alive today, she might say we have “sisu”. Sisu is a Finnish word for a way of being defined as “stoic determination, tenacity or purpose and hardiness”. That’s how we feel about patient-oriented research.

Ways of learning

Experiential learning differs from conceptual learning. I do not understand much of the hard science on some of my teams. I am not a computer modeller, nor a geneticist, nor an economist. Yet there is always an exchange of ideas, a two-way expression of knowledge on any team. My work is founded on my personal social contract to promote the principles of patient-oriented research. My team members are knowledge translators on the scientific side. I don’t have to know everything (and most of it is beyond my reach anyways) but I am proud to contribute real-life tales from the trenches of mental illness.

Doors in motion

Recently I was involved on an international team for six months and I shared my story at a public symposium to a large, world renowned group of researchers. I had landed on the team via connections with the BC SUPPORT Unit (and via Michael Smith Health Research BC). The presentation was nerve-racking. Afterwards, the team celebrated with me, then a member of the audience reached out to ask if I would join a related project as a patient partner. Conscious of my time and energy, the first team kindly nudged me towards the second team, where I was more “fit for purpose”. One door opened, one door closed, and I am better for it. My advice to patient partners is to be adaptable, be a consummate professional, and find the best match you can with your lived experience. And always remember to hold the door open for other patient partners.

Celebration + reflection

There are ups and downs in health research. Hard work doesn’t always pay off, especially with high-calibre teams competing for limited funding. As a researcher and a patient partner I always celebrate when I get a grant with a team. Same holds true when a joint-authored paper gets accepted, or a team-member shares a personal triumph. On the other hand, I accept and am humbled by experience when grant applications don’t make the cut (which happens a lot), or ideas aren’t captured in the final draft (because perhaps they rocked the academic atmosphere and boat a little too hard). As a practising lawyer I learned more from the cases that I lost than from the cases that I won. I am learning to normalize the rejection, although the initial sting still hurts. There will always be another grant and there will always be another publication. Don’t forget the moments in between.

My reflection

We are all individuals, and as patient partners, we are all part of the team at the BC SUPPPORT Unit. We have our differences as people, and as professionals. However, our collective need to contribute to patient-oriented research over-rides our differences. Sometimes I am stymied by what I see as limitations, or administrative needs in our organization. Submitting time sheets (which I choose to do), reading and signing forms, arranging meetings, all these things take time. All I want to do is sing the song of doing health research a different way. But none of these daily tasks is any different from any other workplace. To be clear, I am compensated on an hourly basis for almost all my work although I continue to volunteer ideas and time in unpaid roles. The BC SUPPORT Unit engaged me and another patient partner to help draft their appreciation policy. I am also delightfully compensated by the pleasure that I can put my head down and do the work, knowing that I am part of the bigger effort at the BC SUPPORT Unit. This is my village, and we raise and nurture patient-oriented research together.

Working with the BC SUPPORT Unit allows me to nudge, to push, to question, and to cross boundaries without fear. It has given me confidence, a business card that says “Patient Partner” and credibility in the world of research. My lived experience is like my passport in health research. In my work, there are no borders between researchers, funders, caregivers, nor health-care decision makers in patient-oriented research. I’m usually the only lawyer on a team of scientists, but I don’t feel like an outsider anymore. I’m just a quirky voice that sees things differently. If I want reinforcement or feedback, I have learned to ask for it, and sometimes its constructive criticism, so its tougher to take. Like the time a person said “stay in your lane”. In the context of patient-oriented research, I am the lane! I’ve also been told “enough, lets move on” and I’ve learned for the team to do exactly that. In the battles I’ve fought, sometimes against myself, I got used to stigma and “othering” as a person with lived experience of mental illness. But I have learned that on the best health research teams, absolutely no-one begrudges enthusiasm.

In patient-oriented research, what was once my frontier is now our future. Thank you to everyone at the BC SUPPORT Unit, past and present, for your early encouragement (of my amateur efforts! ) and your indulgences since. I will continue to gain something from every single person I meet through our organization. My journey is unlike any other and yet, it is every patient partner’s journey. We all have a story to tell, and this is where mine ends. We all have lessons to learn, me most of all. As patient partners, we want to be an ordinary part of health research. We want to be welcomed warmly as colleagues and to bring our anything but ordinary stories - more accurately to say our extraordinary lived experience - to our teams.

Conclusions

The very act of co-writing this Commentary as patient partners with the BC SUPPORT Unit speaks for itself. We are two patient partners with over 15 years of experience between us. We believe, with a passion, in patient-oriented research. There are many patient partners out there. There are many more with vision and hope as strong, or stronger, than ours. Together we are all the lived experience of the BC SUPPORT Unit. As patient partners we are sometimes very impatient, and often imperfect. However, we are allies with the BC SUPPORT Unit and we will seek, and find, a new way forward together, in health care research. It’s an honour, and a privilege to do this work. We do it in one project, one position and one engagement at a time, all for patient-oriented research.

As patient partners, we are very appreciative of the opportunity created by SPOR to enable us to further the management of our own health and health care. Patients often lose control over our life to our illness. Our doctors tell us what we have and how we are treated. Our time is taken over by medical appointments. We are told to adhere to one health regiment or another. Our finances are drained by medication and medical costs. And many of us are forced to change our lifestyle and even give up on career. SPOR gives us a voice in how our health is investigated, allowing the health system to make better decisions on how patients are supported, and how to better implement that support. Patient-oriented research is the future of patient care in Canada and we, the co-authors, are proud to be a part of this endeavour.

As co-authors we are privileged to hold this space and hold it open for others. The BC SUPPORT Unit has responded to our very basic need to connect, to inspire, to be heard and to be valued throughout the research process. This is the ongoing legacy of Canada’s SPOR work. We would welcome another Commentary by researchers and academics to balance our perspective as patient partners. Our writing is our impact and we hope and trust that others can continue to pay it forward.

Author contributions

LR and SL developed the initial outline, co-wrote the manuscript, reviewed and revised the content, approved the final version, and agreed to be accountable for all aspects of this work.

Funding

This study was conducted through support of the BC SUPPORT Unit, which is supported by the Canadian Institutes of Health Research (CIHR) under the Strategy for Patient-oriented Research (SPOR) initiative (CIHR ref no: RN413243–458071).

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Ethics approval was not required for this patient partner commentary.

Consent for publication

Not applicable.

Submission declaration and verification

This article has not been previously published.

Competing interests

The authors declare no competing interests.