A Voice in the Wilderness?
October 25, 2024
More than ever before, healthcare organizations are asking patients about their lived experience. But how does that information get used?
We’ve all read the headlines and probably seen it in our own lives and work: our healthcare system is facing huge challenges like staff shortages, limited resources, and high levels of burnout among healthcare professionals.1 Solving those issues isn’t going to happen overnight, but in the meantime there’s an ever-increasing need to involve a group who has been called “the most underused resource in healthcare”2 – patients. And it’s already happening – Canada’s patient and caregiver groups, patient advocates, and individual patients have not only been filling in the gaps, but also playing a key role in policy and healthcare change and improvement.
“While we acknowledge the systemic failures that often impact our community, we work hard to empower patients to be advocates for themselves. When faced with an imperfect system, it falls on the patients themselves to shoulder the added burden of taking a proactive approach to managing their own care.”
Michelle Capobianco
CEO, Pancreatic Cancer Canada
Patient engagement isn’t just good for the healthcare system – it benefits patients and their support networks, too. Patients who see themselves as advocates and partners in their healthcare journey are likelier to have better treatment outcomes, leading to improved overall health and satisfaction. They’re also more inclined to stick to their treatment plan and to do a better job with their general self-care.3
Still, despite the recognized value of patient advocacy and engagement for both the system and patients, it feels like there’s something of a paradox when it comes to recognizing the value of patient voices in healthcare decision-making for drugs.
On the one hand, decision makers are making the greatest efforts they’ve ever made to engage patients and integrate patient perspectives and voices into their processes. As an example, Canada’s Drug Agency (CDA-AMC, formerly CADTH) has recently put out a call for applications for a patient representative to join their Board of Directors, which until now has mainly been made up of provincial/territorial and federal health ministry leaders and other administrators of healthcare and academic institutions.4 The posting says CDA-AMC is looking for someone with “lived or living experience accessing or engaging with healthcare systems in Canada” to help provide strategic direction on how CDA-AMC can most effectively fulfill its role “as the go-to provider in Canada of evidence and advice on the use of drugs and other health technologies.”5
Pharmaceutical companies are also increasing their partnerships with patient communities. You’ll hear them say things like this, from a video by Roche Canada’s patient engagement team: “We need to listen deeply to patients and caregivers and embed their voice deeply into the heart of our organization, as mentors, partners and advisors working together to shape the healthcare system.”6
This sounds pretty good, right?
But despite all these advances in patient engagement, if you were to ask a patient advocate, a representative from a patient group, or an individual patient partner to create a word cloud about how they think their voices are being heard and used, you might see things like gaslighting, smoke and mirrors, window-dressing and checking a box. Many patient advocates feel like some of these agencies and companies talk a big game about wanting to collect patient input, but they don’t always follow through after that. The people doing the listening don’t always provide many details on how the feedback might be used, and afterwards, it’s often unclear whether anything at all has changed based on that input. Like a “check-box” – unfortunately.
One example of a voice that is going unheard comes from patients with spinal muscular atrophy (SMA). Medications are available that can slow the progression of this rare and debilitating genetic disease, and they’re funded in all provinces for patients up to the age of 25. After that, patients in Quebec still have access through the provincial health technology assessment (HTA) body INESSS’ “promise of value” pathway and the provincial drug plan. But everyone else across Canada is out of luck. In other countries, regulators, HTA, and funding bodies have made decisions for adult patients based on supplementing clinical trial data with real-world evidence (RWE), but so far, CDA-AMC hasn’t followed suit. This has been frustrating for patients, who feel that their current and future health shouldn’t be compromised by where they happen to live and that the Agency isn’t giving enough priority to real-world data.7 At a recent SMA conference, patient advocate Bryce McGraw even called out CDA-AMC directly, saying, “We’ve been asking you for years to take RWE, but you’ve been turning it down.”8
“I think that patients are heard when we make enough noise. It’s unfortunate that already disadvantaged people have to allocate the energy they do to influence lifesaving decisions, but yes, eventually with enough noise, they don’t have a choice but to hear us.”
Michelle Burleigh
Founder, Immunocompromised People Are Not Expendable (IPANE);
Co-Chair, Canadian Immunocompromised Advocacy Network (CIAN)
So the question is: Are patients’ voices truly being heard when it comes to healthcare decision-making for pharmaceuticals in Canada? In brief, the answer is: yes, no, and sometimes. Depending on who you speak to, the experience can be very different, and processes can vary from organization to organization. In this issue, we’re going to the source by asking patients what they think, and by looking at examples of how agencies and companies are following through on their promise of listening to patients.
You say patient inclusion; I say patient-centricity
These are some of the words and phrases you might encounter when describing or defining the role that patient input can play in shaping healthcare policy, clinical trial design, and other aspects of healthcare. They might all sound interchangeable, but there are small nuances that make a big difference in terms of defining how much of a role the patient plays – or doesn’t play – in a given process.
Right now, the term that’s favoured by researchers is patient engagement. They feel it’s the most appropriate, patient-forward concept since it’s the “most conclusive” and “furthest developed” when referring to patients as “active partners” in their care. The other terms, they say, are simply gateways to true, authentic participation.9
By the numbers
For those who want to listen, there are plenty of patient voices across the country trying to make themselves heard.More than 170,000: Charitable and non-profit organizations in Canada.10
8.1%: Proportion of Canada’s total GDP that’s contributed by the charitable and non-profit sector.10
More than 13 million: Number of Canadians who volunteer in some capacity with charities and non-profits.10
More than 130: Number of registered patient groups, either pan-Canadian or provincial, in Canada.11-14
62.4%: Proportion of patients in a Canadian survey who said they feel empowered by their lived experiences and see themselves as experts in patient partnership roles.15
$10 million: Funding that was approved for ovarian cancer research in 2019, thanks in large part to lobbying by Ovarian Cancer Canada in which more than 3,000 people wrote to their Members of Parliament and 12,703 people signed a petition to raise awareness of the personal impact of ovarian cancer, the lack of treatments and research, and the urgent need for funding.16
About 120: Number of participants in 2023’s eighth annual Patients Redefining the Future of Health Care in Canada Summit, an annual conference that provides opportunities for patients, caregivers, and patient advocates and representatives from diverse disease and disability groups to come together to discuss a shared vision for healthcare in Canada.17
Over 30: Number of Canadian patients, caregivers, advocacy leaders, and individuals engaged in patient research who were asked to consult on the CanREValue RWE Framework for cancer drug funding decision-making. The participants stressed the importance of engaging with patients to understand and prioritize what they consider to be valuable endpoints and outcomes, and recommended that the framework should not impede access to new drugs.18
References
1. MD Analytics. “Time” top challenge to optimal patient care, say younger physician specialists. https://www.mdanalytics.com/en/survey-data/survey-data-canada/time-top-challenge-to-optimal-patient-care-say-younger-physician-specialists/
2. Warner V Slack Lifework Archive. https://warnerslack.bidmc.org/content/%E2%80%9Cpatients-are-most-underused-resource%E2%80%9D-%E2%80%93-warner-slack-1933-2018
3. Marzban S, et al. Impact of Patient Engagement on Healthcare Quality: A Scoping Review. J Patient Exp. 2022; 9: 23743735221125439. doi: 10.1177/23743735221125439
4. CDA-AMC. Board of Directors. https://www.cda-amc.ca/board-directors
5. Canada’s Drug Agency. Summer 2024 – Call for Nominations. https://www.cda-amc.ca/board-directors-patient-member-nomination
6. Roche Canada. Patient Engagement. https://www.rochecanada.com/contact/patient-engagement
7. Patient Voice. “Why not me?”: Many SMA patients left without access to disease-modifying medicines due to age, geography. https://www.patientvoice.io/many-sma-patients-left-without-access-to-disease-modifying-medicines-due-to-age-geography
8. Allison Wills. LinkedIn post on the National Cure SMA Conference. https://www.linkedin.com/posts/willsallison_why-not-me-many-sma-patients-left-without-activity-7231324881479512067-moXD?utm_source=share&utm_medium=member_desktop
9. Hickmann, E., et al. All together now – patient engagement, patient empowerment, and associated terms in personal healthcare. BMC Health Serv Res. 2022; 22:1116. doi: 10.1186/s12913-022-08501-5.
10. Imagine Canada. Sector Impact: What is the charitable and nonprofit sector? https://sectorsource.ca/research-and-impact/sector-impact
11. Province of British Columbia. Your Voice. https://www2.gov.bc.ca/gov/content/health/health-drug-coverage/pharmacare-for-bc-residents/drug-review-process-results/your-voice#patient-group
12. Province of Ontario. Registered patient groups. https://www.ontario.ca/page/registered-patient-groups
13. Clinical Trials Quebec. Directory of Patient Organizations. https://clinicaltrialsquebec.com/patient-support/directory/
14. Caregivers Nova Scotia. Health and Community Organizations. https://caregiversns.org/resources/our-partners-and-allies/health-and-community-organizations/
15. Rowland P, et al. Exploring meanings of expert and expertise in patient engagement activities: A qualitative analysis of a pan-Canadian survey. SSM - Qualitative Research in Health. 2023 December;4:100342. doi: 10.1016/j.ssmqr.2023.100342.
16. Baugh E, et al. Advocacy in Action: Leveraging the Power of Patient Voices to Impact Ovarian Cancer Outcomes in Canada. Curr Oncol. 2022 Feb; 29(2): 1252–1261.
17. Save Your Skin. Summary of the Eighth Annual Patients Redefining the Future of Health Care in Canada Summit. https://www.saveyourskin.ca/_files/ugd/e08cdc_87f02081cb6a488ab2efdd461b6aabc1.pdf
18. ARCC. CanREValue: Value-based decisions from Real World Evidence. https://cc-arcc.ca/canrevalue-about/