MJM MedTalks
From Fractures to Fulfillment: Larry Funnell's Journey in Patient Engagement

S02E06

Khiran Arumugam¹, Vanessa Ross¹, Larry Funnell, Katherine Lan¹, Samy Amghar¹, Renée-Claude Bider¹, Masha (Maryia) Samuel¹, Esther SH Kang¹, Jan Pack¹, Susan Joanne Wang¹ for the McGill Journal of Medicine
Published online: January 20, 2025

¹McGill University
mjm.med@mcgill.ca

Content overview

• 0:00 Introduction
• 2:38 The Journey of Advocacy: Larry Funnell's Transformation Through Osteoporosis Patient Engagement.
• 8:11 The Value of Patient Engagement: What Is Patient Engagement?
• 12:30 Navigating Patient Engagement: How to Engage Men?
• 18:28 Championing Patient Engagement: Larry Funnell’s Impact and Future Endeavours
• 21:43 General Advice for Trainees
• 25:30 Conclusion

Glossary

• Patient Engagement: Active collaboration between patients and healthcare professionals or researchers, where patients contribute their lived experiences to shape research, improve healthcare services, or develop public policies. Patient engagement ensures that care is more personalized and relevant to the needs of patients.
• Patient Partner: Individuals who have personal experience with health conditions and collaborate with researchers or healthcare providers. They help influence the direction of research and healthcare initiatives by providing insights from a patient’s perspective, often involved in decision-making processes, policy development, and advocacy efforts.
• Osteoporosis: A chronic condition characterized by weak and brittle bones, which increases the risk of fractures, particularly in the spine, hip, and wrists. Osteoporosis is often referred to as a "silent disease" because it progresses without symptoms until a fracture occurs.
• Bone Fractures: Breaks in bones often caused by osteoporosis or low bone density. Osteoporotic fractures, or low-trauma fractures, occur with minimal force, such as a fall from standing height (fragility fractures), and are more common in older adults.
• Canadian Osteoporosis Patient Network (COPN): A national patient-driven network under Osteoporosis Canada, which provides education, peer support, and advocacy for people affected by osteoporosis. It helps ensure that patient voices are heard in healthcare and research concerning bone health.
• Osteofit: A targeted exercise program for individuals with osteoporosis, aimed at improving strength, balance, and coordination to prevent falls and fractures. These programs are designed under the guidance of healthcare professionals familiar with the condition.
• Bone Density: The amount of bone mineral in bone tissue, usually measured by Dual-Energy X-ray Absorptiometry (DXA) scans. Low bone density (osteopenia) and osteoporosis increase the risk of fractures.
• Bone Turnover: The process of breaking down old bone tissue (resorption) and forming new bone tissue (formation). In healthy bones, turnover is balanced, but in osteoporosis, bone resorption often exceeds formation, leading to weakened bones.
• Falls Prevention: A range of strategies and interventions designed to reduce the risk of falls, particularly among older adults and people with osteoporosis. These can include exercise programs to improve strength and balance, home modifications, and education on safe movement practices.
• Knowledge Translation: The process of applying research findings to practical uses in clinical practice, policy, and patient care. It ensures that healthcare professionals and patients benefit from the latest scientific knowledge, making treatments and interventions more effective.
• Peer Support: Emotional and social support provided by individuals who have similar health experiences, such as those living with osteoporosis. Peer support helps reduce feelings of isolation and promotes shared learning, coping strategies, and encouragement.
• Men & Osteoporosis: Osteoporosis is often underdiagnosed in men because it is traditionally viewed as a women’s disease. However, men can suffer from significant bone loss and fractures, especially as they age. Engaging men in osteoporosis awareness and care is a key advocacy focus for patient partners like Larry Funnell.
• Osteoporosis Canada (OC): A national organization dedicated to raising awareness about osteoporosis, providing education and resources to patients and healthcare professionals, and advocating for improved osteoporosis management and prevention in Canada.
• CIHR-IMHA (Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis): A major Canadian funding body that supports research in musculoskeletal health, including osteoporosis. It also promotes patient engagement in research through partnerships with patient groups and patient partners.
• Bone Health: A holistic term encompassing strategies and interventions that support healthy bones, including adequate calcium and vitamin D intake, regular weight-bearing exercise, and medications to reduce bone loss in those diagnosed with osteoporosis.
• Fracture Liaison Services (FLS): A healthcare service model aimed at identifying individuals who have suffered a fragility fracture (a fracture resulting from minimal trauma) and ensuring they receive appropriate treatment for osteoporosis to prevent future fractures.
• Dual-Energy X-ray Absorptiometry (DXA): A diagnostic test used to measure bone mineral density (BMD). It is the standard method for diagnosing osteoporosis and assessing fracture risk.
• Low-Trauma Fractures: Fractures that occur from a fall from standing height or less, commonly associated with osteoporosis. These fractures can happen in the spine, hip, wrist, and other bones and signal weakened bones in need of treatment.
• Clinical Practice Guidelines: Evidence-based recommendations that guide healthcare professionals in making decisions about patient care. For osteoporosis, the guidelines include recommendations on screening, diagnosis, treatment, and fracture prevention which was updated recently in 2023.
• Men’s Osteofit: A support and exercise program designed specifically for men, focusing on bone health, strength, and peer support. It aims to reduce stigma around men’s osteoporosis and provide a tailored approach to their needs.

Links and papers

Here are some additional resources and articles relevant to osteoporosis, patient engagement, and bone health:

• Canadian Osteoporosis Patient Network (COPN):

  https://osteoporosis.ca/copn

  COPN provides peer support, education, and advocacy for individuals affected by osteoporosis.

• Osteoporosis Canada (OC):

  https://osteoporosis.ca

  Osteoporosis Canada offers comprehensive resources, including information on osteoporosis diagnosis, treatment, and prevention.

• CIHR-IMHA Patient Engagement Resources:

  https://cihr-irsc.gc.ca/e/27297.html

  CIHR’s Institute of Musculoskeletal Health and Arthritis promotes patient engagement and supports research initiatives in bone health and osteoporosis.

• Fracture Liaison Services (FLS):

  https://osteoporosis.ca/health-care-professionals/fracture-liaison-service

  Learn about the Fracture Liaison Service model, which helps prevent secondary fractures in individuals with osteoporosis.

• Bone Health and Men’s Osteofit Resources:

  https://osteofit.org

  This program offers information on exercises and strategies tailored to men’s bone health and osteoporosis management.

• Patient Engagement in Research (PiPER Toolkit):

  https://uhn.ca/corporate/AboutUHN/PiPER_Toolkit

  This toolkit provides guidance on building meaningful partnerships between patient partners and researchers.

• OsNET: Advancing Bone Health and Research in Canada

  https://osnet.ca/

  A network of Canadian scientists, clinicians, patient partners and bone health organizations formed to facilitate research and advocacy for bone health.

• CTTP-CANTRAIN: Clinical Trials Training Program - CANadian Consortium of Clinical Trial TRAINing platform

  https://wecantrain.ca/home/

  CANTRAIN is dedicated to developing clinical research competency delivered through efficient, cutting edge and inclusive educational curricula.

Transcript

0:30 Khiran Arumugan (KA): Hello everyone, thank you for joining us on another MJM podcast episode. McGill Journal of Medicine (MJM), MedTalks, is a podcast series where members of the Faculty of Medicine and Health Sciences at McGill University, and other esteemed members from different universities are interviewed on topics related to career, research, advocacy, and more. The aim of MedTalks is to open a space where experts can share information and advice for trainees in healthcare and medical sciences. My name is Khiran Arumugam, a McGill graduate in Experimental Medicine, and I am with Vanessa Ross, a McGill medical student. In this episode, as members of the MJM's Podcast Team, we have a conversation with Larry Funnell about his personal experience with patient engagement and the importance of patient partnerships in healthcare and clinical research.

1:00 Vanessa Ross (VR): It now gives me great pleasure to introduce today's guest, Larry Funnell. Motivated by an unexpected diagnosis of osteoporosis in 1998, Larry has become a determined advocate for improvements in the understanding and in management of osteoporosis in Canada. After retiring in 2006 from a 35-year career in the federal government, Larry immediately launched a second career as a volunteer, drawing on his lived experience to increasingly participate in efforts to raise awareness, fundraise, advocate for, and otherwise support osteoporosis programs. He sat on the Executive Committee of the Canadian Osteoporosis Patient Network (COPN) of Osteoporosis Canada (OC) for 17 years, a span of time that included five years as the COPN Chair and another five years on OC’s Board of Directors. He also spent three years as a patient research ambassador with the Canadian Institute of Health Research Institute of Musculoskeletal Health and Arthritis (CIHR - IMHA). Larry was a patient partner on the steering committee for the development of the 2023 Clinical Practice Guidelines for Management of Osteoporosis and Fracture Prevention in Canada. Thank you so much, Larry, for being here with us today.

Larry Funnell (LF): Well, thank you for inviting me. I’m delighted to have this opportunity to share my story and talk about the importance of patient engagement in research.

2:38 KA: So first, we'll start off with the first segment, the Journey of Advocacy: Larry Funnell's Transformation Through Osteoporosis Patient Engagement. As highlighted in the introduction, you transitioned from government employee to advocate for men with osteoporosis. Now, would you mind sharing the narrative of your journey?

LF: So let's turn the clock back to the mid-90s. I was a happy guy, loving family, nice home, a good job, and a dog that doted on me. I was healthy, too, didn't even need a family doctor. Sure, I was accident-prone, and I sheepishly accepted all the good-natured ribbing every time I showed up with another broken bone. Besides, after a few months, the bones would be healed, and the pain would be gone. That's normal, right? But the broken bones kept coming. Each time, I suffered blinding pain. I endured lengthy periods of convalescence, and watched helplessly while others performed even the simplest of tasks. I was unable to work and reluctant to socialize for weeks at a time. I broke bones in three different provinces and on two continents. I was treated for those fractures in seven different hospitals. It never occurred to me, nor did it occur to the various healthcare professionals who treated me in emergency rooms, x-ray tech clinics, and doctors' offices, that the fractures were somehow connected to my bone health. And, although the fractures received excellent treatment, the underlying cause of the broken bones went unnoticed and untreated. The alarm bell finally went off when I had my 8th fracture, and my wife's doctor told her to tell me to get my bones tested. I was devastated by the diagnosis that followed: osteoporosis. How could that be? I was a 48-year-old man, not a frail, elderly lady. I stressed, I panicked, and I set out on a never-ending quest to answer two questions. Why wasn’t I diagnosed much sooner? And how could I end the cycle of recurrent fractures? Learning more about the disease did little to comfort me. Prevalence among men and women, mortality rates, loss of independence—the statistics all weighed heavy. I learned that it was not normal to break bones so easily and that the fractures I had been receiving were the most obvious but far too often missed warning of osteoporosis. And, I learned that I was at high risk of having more of those fractures.

5:05: I also discovered that there was no shortage of information, medication, and recommendations for the treatment of osteoporosis. Osteoporosis in women, that is. But what about men? And what about me? Why had I apparently been singled out? I read everything I could get my hands on. I volunteered, chaired the Canadian Osteoporosis Patient Network, became a board director for Osteoporosis Canada, advocate, fundraiser, blogger, newsletter editor, research ambassador. Each new job helped me find more of the answers I craved. And, I also gradually realized that I could make meaningful contributions to research. Although I was never going to become an osteoporosis expert, I knew that I was already an expert—an expert in me. If the researchers were looking for someone with lived experience, I had become a one-stop shop. After all, I was a walking, talking osteoporosis care gap. Over the past decade, I have become increasingly engaged in research. I've been a collaborator, a co-applicator and co-lead, a writer of support letters, and a research subject. It had became clear to me: engaged patient partners can make a difference.

6:24 VR: Wow, that's really quite the story. It's amazing how you turned that kind of adversity into becoming essentially a patient expert I would say. Maybe not a medical expert, but definitely an expert in patient engagement. I'd like to know, how did joining the COPN that you mentioned briefly—the Canadian Osteoporosis Patient Network—what effect did it have on your osteoporosis journey?

6:40 LR: Well, joining COPN was nothing short of life-changing. I responded to an open call for patients interested in developing a strategic plan for this new organization called COPN, or the Canadian Osteoporosis Patient Network. I saw it as an opportunity to utilize the knowledge, skills, and experience I had gained from 35 years in government: strategic planning, policy development, team building, interest-based negotiation, and knowledge translation. Those were all things I was familiar with. And the timing was right. I retired that same year and was intent on focusing more attention on my health and on the management of osteoporosis in Canada. We were all inspired by the COPN founders’ vision of a Canada where all men and women affected by osteoporosis can live well and live safely. For the first time, I shared my story with someone outside my family after eight years of total silence. And now, of course, I don't shut up about it. It was also the first time I experienced peer support. They listened, they understood where I was coming from. I didn’t know it at the time, but joining the COPN exec was a giant first step in my journey to becoming a patient partner.

8:11 KA: The second segment we will be looking into is the value of patient engagement: what is patient engagement?

VR: Yes, in one paper, Larry's friend and colleague Dawn Richards brilliantly defined the terms patient, patient engagement, and patient partners. So let's go over that together. First, a patient is a term that includes individuals with personal experience of health issues, as well as their formal caregivers, family, and friends. Patient engagement is characterized as meaningful and active collaboration in research, governance, priority setting, and knowledge translation. Depending on the context, patient-oriented research may also engage people who bring the collective voice of specific affected communities. These individuals are not just considered patient advocates but also patient partners. They play various roles and have different responsibilities in research, such as: research team members, research knowledge ambassadors, peer reviewers, decision-makers, fundraising ambassadors, etc. These patient partners include patients, families and care partners who become actively involved in promoting high-quality, safe, and equitable patient care. Patient partners may also contribute to improving programs and service design from organizational and systemic levels. As experts in their own experiences, patient partners provide rich knowledge and perspectives that clinician-scientists and scientists may not have.

9:49 KA: The PiPER toolkit stands for Pride in Patient Engagement in Research, which was created by members of the University Health Network in Toronto to provide advice in building meaningful partnerships between people with lived experiences and research teams. Now, what is the role of patient engagement in research, and could you comment on the value of involving people with lived experiences as partners in research?

LF: Well, I’ll keep this one short. Simply stated, patient stories and patient engagement bring research to life. They are key to making the research relevant and understandable to patients, policy, and decision-makers. Research has shown that patient engagement, indeed, improves health outcomes and empowers patients to take charge of managing their health.

KA: So we'd like to question, in general, the benefits and challenges of patient engagement. In your experiences, Larry, what kind of hurdles have you had to overcome as a patient partner? And what have been the benefits and challenges?

LF: Well, I’ll turn it around and start with the benefits. This has all helped me to find the answers to the questions I had about my own condition. It's a great way of getting that inside information. It gives me satisfaction in knowing that my voice matters and that I've been able to contribute. And it gives me a better understanding of the processes behind the science and the evidence. It can be intimidating, not unlike kind of a student-professor relationship. Sometimes we might feel like the student and everybody else in the room are the professors and teachers. And the unfamiliar language of science, the acronyms, the scientific and technical terms—it’s difficult to cope with in the beginning, until we were all trained to the same level on how I can talk and understand. And the constant learning: GRADE, in vivo, what do they stand for? How are they used? Things like that we had to learn. And there was no or limited access to support—so no administrative support for the kinds of things we might need to do to participate. Our personal tech, like computers and phones, and what have you, may not be sufficient to participate properly, along with the software incompatibilities; maybe the software was too old or simply out of date. Those were some of the key challenges.

VR: Thank you so much for sharing that.

12:28 KA: Alright, before we begin the third segment of this interview—navigating patient engagement: how to engage men—I’d like to highlight some key findings from clinical research studies found in the literature today. Men account for one-third of osteoporosis-related fractures worldwide, bearing a substantial burden from these injuries. Older men, in particular, experience significantly worse outcomes from fractures compared to women, including higher rates of subsequent fractures and refractures, loss of autonomy, reduced functional mobility, and increased mortality. Despite this, osteoporosis is often considered a disease primarily affecting older women, leading to men being significantly under-evaluated and under-treated. Studies show that over 85% of Canadian men who suffer from fragility fractures do not receive osteoporosis screening or treatment strategies.

13:27 VR: Now, to talk a little bit more about men's patient engagement in osteoporosis. You've said that in your experience, most men don't pay enough attention to their bone health, nor do they become engaged in research and other initiatives related to osteoporosis. So we ask, how can we reach and engage men?

LF: Well, I've been grappling with this problem ever since I joined COPN. I was the only man on the COPN exec the whole time I was there. But still, I'm constantly barraged by requests to help answer why men don't participate. You know, I'm asked for advice on how to fix posters, how to communicate, and how to find men to participate in clinical trials, etc. I think in the osteoporosis world, men's lack of interest in becoming engaged is perpetuated by the stereotype and the perceived stigma of being a man with a woman's disease. And they may not understand what they have to offer and why their voice can be so important to the research. The challenges can be daunting to someone considering getting involved in patient engagement—for instance, the fear of public speaking or concerns about participating in an unfamiliar environment with unfamiliar language. Personal stories are key. In my experience, men have become just as obsessed as women talking about their issues. Get a few guys together over coffee, and we're all talking. We experimented for 10 years with something we call Bones and Beer—an entertaining men's night out that offers good food, craft beer, and celebrity keynote speakers. And of course, we had a side dish of hard-hitting facts about men and osteoporosis served by a leading osteoporosis expert. These events consistently sold out, offering proof that this bait-and-switch approach can be successful.

15:28 KA: And, are there any specific resources, training, or support systems that you believe would enhance the engagement of patients in research?

LF: Well, one that we don't talk about very often is peer support. Peer support can play a very important role in building community and interest in engaging in research. Osteoporosis Canada’s support groups for men and women that meet monthly via Zoom offer a good starting point for patients who might be interested in engaging in research. Those of us in the osteoporosis world can learn from the success of other organizations and groups. The Canadian Arthritis Community is a great example. And the Canadian Institute of Health Research (CIHR) Institute of Musculoskeletal Health and Arthritis has developed a set of online, self-directed, free modules applicable to any research where patient partners are engaged. They are tailored to either patients or researchers. And the Strategy for Patient-Oriented Research partnerships in each province facilitates and funds research. They connect patients, partners, researchers, healthcare providers, and policymakers. And then there are two newer projects that have come along. The first one is called OSNET. It's a Canadian network of multidisciplinary scientists, clinicians, patient partners, and bone health organizations formed to create new knowledge and provide advocacy and leadership for bone health in Canada. And finally, CANTRAIN—this is another recent initiative with the goal to harmonize, enhance, and sustain the quality and capacity of the Canadian clinical trials workforce through an innovative and integrated training platform.

17:21 KA: That's wonderful to hear. To be honest, it goes a long way to see that there are so many resources that have started to be established for not just women but also men. The next question: during your time assisting with the updated 2023 osteoporosis guidelines, how would you describe the current evidence in the literature regarding research involving men specifically with osteoporosis?

LF: Well, let me start by saying I was honored and proud to be part of the process—from the very first day to the publication of the new guideline. And I was pleased to see the diligent effort made to uncover and consider all relevant information on men and osteoporosis. But the conclusion that more evidence is required to better guide management of male osteoporosis reinforces the fact that we need more men to participate in studies across the full spectrum of patient engagement. We simply need to work harder to get more men engaged.

18:28 KA: The next section or segment that we will be looking into is: championing patient engagement, Larry Funnell’s impact and future endeavors.

VR: Congratulations, first of all, on your work in the Osteoporosis Canada 2023 guidelines. It must not have been an easy task, and thank you for being a part of it. How do you feel that work contributed to the well-being of other patients with similar lived experiences, particularly men with osteoporosis?

LF: I seized the opportunity to participate in the first COPN meeting of the guideline team and was pleased to do so. I was a full member of the steering committee, and I was on a couple of other committees: the conflict of interest committee and the knowledge translation committee. I helped recruit other patient partners from the COPN executive committee to participate in all the working groups, and I led the completion of the COPN survey. We had 1,100 respondents from the COPN membership across Canada. The team collectively ensured that the patient voice was heard and incorporated in the new guideline. The new guideline responds to the priority issues identified by patients in the COPN survey by providing healthcare providers and patients with evidence-based advice on lifestyle choices, benefits and harms of medications, and fracture risk assessment.

20:00 VR: Some really hard and also very important work, so thank you. Not that that is not already enough, but we're curious to know what is coming next for Larry Funnell. Can you share any details about some new projects or initiatives you’re currently working on?

LR: Well, there are a number that I continue to work on and have been for several years, but I intend to selectively participate in a half a dozen or so clinical research projects, and usually all related to osteoporosis. I'm a patient partner in CANTRAIN and OSNET, that I mentioned earlier. So that means I'll be busy for at least a couple of years on those two projects. And I co-lead a new project out here in BC. It's a CIHR-funded public policy research initiative to expand access to fracture prevention programs across BC. And, of course, this is referring to Osteoporosis Canada’s fracture liaison services that are now available only in three locations in BC. So, there's a lot of work to do to see them taken to other hospitals across the province. And I'll continue to engage in some awareness activities, particularly for the most vulnerable populations, such as men in assisted living and long-term care. And there's always some other volunteer stuff that comes along that sounds interesting, and they need somebody to lend a helping hand. Well, call on Larry.

VR: Wow, I think you’ll still have a pretty busy plate for the years to come, so that sounds good.

21:43 KA: So, the next segment will be our last. It’s the general advice to students. What we usually like to do with the MJM podcasts is to end it off with some advice for medical students and research trainees, especially when they're going to be working with not only patients but also patient partners. What are some things that you, as a patient, a former patient partner, and an advocate for men with osteoporosis among your many hats, would suggest? How would you suggest approaching one's work in such a way that it continues to excite you, even after 10 or 20 years in the field?

LR: I guess we can all realize that money can be a strong motivator, especially when we have to cope with today's runaway costs. I'll admit that there was a time when my hopes and dreams were put on hold while I struggled to support a young family. But, by good fortune, hard work, and making some nervous moves along the way, I found a career that gave me all the excitement and opportunity I needed. So, what motivates me to keep volunteering after I've been at it for almost two decades? Well, there’s satisfaction in helping others and the determination to get the job done. But how does that saying go? "Find a job you love to do, and you'll never work another day in your life." Well, for me, that job is volunteering. So what can you do? Well, look past the money to understand what truly motivates you and keep your eye on that prize. And finally, be a volunteer.

23:21 KA: Wonderful, great words to share. A multidisciplinary research team can be comprised of scientists, research staff, trainees, and of course patient partners. And as a patient partner actively involved in research, we want to know what advice you would give to a student, medical student, or a scientist in healthcare who wants to engage patient partners in a research project with an authentic and very supportive approach.

LF: Well, you mentioned earlier a couple of resources, and there really is a lot out there to help you work through your decision on whether or not you want to engage patient partners in your research project. So I'll share just a few of my own thoughts on top of all of those you are sure to read. So, be prepared to invest the time, effort, and resources required to find and engage with the right partners, and be confident your project results will benefit. Get to know your patient partners—look beyond their patient qualifications to the many other skills and experiences they might bring to the table. And by all means, enroll in the IMHA patient engagement training modules.

24:37 KA: Wonderful. I'm sure that hearing this, a lot of our future medical students and researchers will want to be very involved in patient engagement. I, myself have been taking those training modules and getting involved, and trying to incorporate patient partners in my research. So before we end our episode, we would like to know what motivates you to continue your work in patient engagement and advocacy for men with osteoporosis.

LR: We need to debunk the persistent myth that osteoporosis only affects women. With aggressive, effective patient engagement in research, development of public policy, and knowledge translation, we can close the care gap and help ensure that women and men are better equipped to manage their osteoporosis and prevent secondary fractures.

25:30 KA: That’s all the time we have today. Thank you so much to Larry for this insightful interview, which has provided us with a profound understanding of the importance of patient engagement in healthcare. Your unwavering commitment to the osteoporosis community, as well as your involvement in both the Canadian Osteoporosis Patient Network and Osteoporosis Canada, reflects an admirable dedication to improve the lives of those dealing with this condition. Larry's experiences and perspectives highlight the many advantages of patient engagement in healthcare and research. These benefits include increased awareness and recognition of patient needs. Larry’s continued collaboration to build a future in which osteoporosis is understood and managed properly by healthcare professionals and patients is truly inspiring. So please see the show notes, where you will find any relevant links and papers on projects we’ve discussed today.

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