Patient Advocates on Patient Advocacy

October 25, 2024

By guest author, Lisa Machado 

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Special guest author Lisa Machado and her fellow advocacy leaders are speaking up on behalf of patients – but are healthcare decision makers really listening?

Who better to learn from about patient voices than patients and advocates directly? We invited Lisa Machado, Founder of the Canadian CML Network, to share her thoughts and those of two fellow advocacy leaders, Louise Binder from Save Your Skin Foundation and Jennie Dale from Dense Breasts Canada, on what’s working – and not working – when healthcare decision makers engage with patients’ lived experience.


“Pretty good”… but not good enough?

Ask health advocate and consultant Louise Binder if patients are being consulted when it comes to decision-making for pharmaceuticals and healthcare, and she'll tell you that things are looking up.

"Well, it's not a mess. It's actually pretty good in a few areas."

Binder highlights the Canadian Institute for Health Information (CIHI) as one organization that’s doing a pretty good job to foster patient inclusivity: embedding lived experience into its fibre by partnering with patients to generate data and support knowledge exchange between communities and providers with the aim of improving systems, care, and ultimately, health outcomes.

But “pretty good” is not good enough for thousands of patients struggling to navigate a medical system plagued by shortages of healthcare professionals, staff burnout, delayed screening, and slow drug approvals. Add in the fact that many pharma companies seem to treat lived experience like just another “check-box” to be crossed off, and patients and patient groups are left fighting to legitimize their expertise, even when they do have a seat at the decision-making table.

At the core of this, as any patient knows, is a system-wide tendency to overlook the value of lived experience. “I don’t have time to ask my patients how their life has changed since they started taking the medication I prescribed,” a doctor once told me after a particularly gruelling patient experience meeting. Pharmaceutical companies can be part of the problem, too, if they don’t engage patients in the early stages of clinical trial design, don’t pay advocates for their time spent consulting, or worst, don’t involve patients in their businesses at all. Perhaps most worrisome is the lacklustre commitment to patient inclusivity by Canada’s regulatory agencies. Consider the recent call by Canada’s Drug Agency (CDA-AMC, formerly CADTH) for one patient (only one!) to sit on its board.5 For many advocates, it’s just one more example of another organization that is just “checking the box.”

Steps in the right direction

Of course, that raises another question: just as the doctor who doesn’t know the needs, expectations, and goals of their patient can’t possibly provide the best and most appropriate care, how can an organization that is not embedding patients and lived experience into their business in a meaningful way make decisions that adequately and fairly reflect the reality of those they are supposed to be serving?

Well, they can’t. But some interested parties are taking the idea of patient inclusion seriously.

Take Novartis, for example. After they presented the results of their CML Survey of Unmet Needs (CML SUN) at a European hematology conference in 2023,19 the patient community convinced Novartis that explanations and translations of the data should come not from the company, but from the experts and owners of these experiences: the patients themselves.

That was especially meaningful because the results were not all favourable – the survey showed that many patients were dealing with significant, life-affecting side effects, while most doctors didn’t even consider patients to be partners in their own treatment decisions. This collaboration resulted in a suite of patient-built resources, including a web page and a social media campaign that let patients, caregivers, and clinicians share their experiences and insights through stories and video interviews.20 The feedback from the community and other advocacy groups was enthusiastic, with some calling the initiative “revolutionary” and “innovative.” One patient called it “the essence of life with CML, uncensored.”

While the insights and resources from CML SUN have stimulated some vital conversations, they’re only one tiny step toward recognizing the value of lived experience. An even more meaningful way for industry to show an authentic commitment to patient engagement would be to use these learnings to inform decisions and strategies in ways that respond to patient needs and improve lives and outcomes. Maybe that means using pharma’s influence and dollars to educate healthcare providers on better communication with patients or supporting patient organizations as they work to have their voices heard in clinical trial design, treatment development, and access. After all, let’s face it: asking the questions is the easy part.

Alexey Salamakha, Director of Oncology Patient Engagement at Novartis, agrees that the initial success with CML SUN is only the start. “The company is stepping back to let the community leverage its expertise in sharing the [survey] findings with patients,” he says. In his view the project was successful because it consistently engaged community experts throughout the process, from concept development through to completion and presentation of results. In fact, Novartis’ patient engagement and patient advocacy strategy is built on this type of community collaboration. Generating robust and reliable data is essential to fully understanding patient life experiences and integrating these learnings into the future of innovation. At the same time, such data, if published, can be useful to the CML community in their advocacy efforts.

“CML patient organizations have been leaders in best practices for patient engagement, at times steering the industry in new and challenging directions, but the lessons learned from these interactions are extremely valuable and will help shape the future of patient engagement in drug research and development,” he says.

Jennie Dale, co-founder and executive director of Dense Breasts Canada (DBC), says she has had similar experiences of fruitful patient-informed collaborations, particularly with high-level government officials. It’s no small feat for an organization run entirely by volunteers.

“Do I think that patients are being heard? Yes!” says Dale, who has spent years advocating (successfully) to get breast density recognized by healthcare professionals as a risk factor for breast cancer, and, more recently, has been instrumental in pushing governments to lower the recommended age to start screening for breast cancer from 50 to 40.21

“Our efforts have helped lead to 20 policy changes, we have been invited to share lived experience on numerous committees, and we have met with provincial health ministers, as well as the federal health minister,” she says. “They are listening.”

And she may be right. One only has to look as far as a recent victory by Cystic Fibrosis Canada. Their advocacy was an important factor in Health Canada’s decision to approve Trikafta, a life-changing drug for people with common types of CF.22 Yet another example: recognizing that people who work as firefighters are at increased risk of pancreatic cancer, Pancreatic Cancer Canada has successfully advocated to have the deadly disease listed as a presumptive cancer in firefighters in some provinces, while raising awareness among firefighters about their risk.23

“The patient voice is very important, but you have to have medical expertise right alongside it – the patient brings the experience, and the medical expert brings the evidence.”

Jennie Dale
Co-founder and Executive Director
Dense Breasts Canada

 

While Dale acknowledges that this openness to work with patients and take lived experience seriously is not the norm within the world of health advocacy, she says she has learned a lot over the years about what can help clear the path to a seat at the decision-making table.

“Just lived experience won’t move the needle in terms of policy,” she says. “The patient voice is very important, but you have to have medical expertise right alongside it – the patient brings the experience, and the medical expert brings the evidence.”

Climbing to the top of the pyramid

When Dale thinks of patient engagement, she pictures patients working alongside decision-makers, a stark difference from the typical “patient-centric” model that envisions the patient and their experience in a little bubble in the middle, with everyone else arranged around them.

Binder says we can do even better.

“Forget about the circles around patients,” she says, advocating for a pyramid model with patients on top and everything else – therapy development, drug access, trial design, and so on – sitting underneath them, shaped based on their needs and experiences. “We need to work harder at this.”

And though Dale thinks there has been a shift in the last few years toward more discussion about the need for better patient inclusion within organizations and government, overall, she calls it “lip service.”

“No one knows what to do with patient experience,” she says. “Especially in research.”

“Patient groups need to know that they can and need to fight to have their voices heard. As for everyone else, we should always be taking into account the voice of the patient.”

Louise Binder
Health policy consultant and advocate
Save Your Skin

 

So how do we get to that coveted place where patient involvement is the basis of all healthcare decisions, where it makes up the foundation of all policy development and change, and where patients play critical and essential roles in decisions that are made about them?

“Patient groups need to know that they can and need to fight to have their voices heard,” says Binder. “As for everyone else, we should always be taking into account the voice of the patient.”


References

5. Canada’s Drug Agency. Summer 2024 – Call for Nominations. https://www.cda-amc.ca/board-directors-patient-member-nomination

19. Lang F, et al. P668: Chronic Myeloid Leukemia Survey on Unmet Needs (CMLSUN) Balancing Tolerability and Efficacy Goals of Patients and Physicians through shared decision-making. Hemasphere. 2023 Aug 8;7(Suppl ):e8318962. doi: 10.1097/01.HS9.0000969576.83189.62.

20. CML Advocates Network. CML Survey of Unmet Needs. https://www.cmladvocates.net/cml-sun/

21. Dense Breasts Canada. https://densebreastscanada.ca/

22. Cystic Fibrosis Canada. Trikafta. https://www.cysticfibrosis.ca/our-programs/advocacy/access-to-medicines/trikafta

23. Pancreatic Cancer Canada. Fire Fighting and Pancreatic Cancer. https://pancreaticcancercanada.ca/awareness-and-advocacy/firefighting-and-pancreatic-cancer/

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