Turning “Talking the Talk” into “Walking the Walk”

October 25, 2024

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Some organizations in the Canadian healthcare space are truly embedding patient voices in their programs – and turning words into action

In spite of the many pressures on healthcare and the barriers to systemic change, there are Canadian organizations that are leading the way in making sure that patient voices are not only being heard, but also integrated into programs and strategies. Here are some agencies and initiatives that are taking lived experience and turning it into real change.

INESSS: Meeting patients where they are

INESSS, Quebec’s health technology assessment (HTA) body, is taking a more direct approach to patient input. Instead of the typical process where drug manufacturers collect patient data and submit it to the HTA agency, they’re going straight to the patients. They’ve even codified it into a vision statement and policy document called “Des voix qui comptent” (Voices that count).24 “At the centre of our vision statement, we try to clearly state that INESSS recognizes the perspectives and knowledge of patients, users, caregivers and citizens as an essential element in its governance and evaluation of health and social services,” explains Olivier Demers-Payette, Scientific Coordinator for Methodology at INESSS.25

One notable initiative within this patient-centred approach is a “Users and Relatives Panel”, a permanent panel established in 2018 that provides input into the agency’s strategic, scientific, and operational decision-making processes in the area of mental health and social services. The panel consists of six individuals with expertise and lived experience in a diverse range of healthcare contexts, including physical disability, neurological impairment, mental health issues, addiction, and vulnerable populations. They meet four to five times per year to hear data presentations from researchers and other experts, and provide their input on patients’ real experiences and needs. And they’re paid for their time.25

Now that the panel has been in place for a few years, INESSS has been able to reflect on its impact – and so far it’s been an eye-opener to everyone involved. They recently conducted a qualitative descriptive evaluation study to look at how the panel has contributed to various projects and policies, and to get insights into what the experience has been like for the panellists as well as the researchers who work with them. They found that in the initial two years of the panel’s existence it reviewed twelve projects, with panel members contributing to strategies for reaching patients and their loved ones, and to the methods used for gathering their perspectives and experiential knowledge. This input “enabled health professionals to consider dimensions they had not identified, to better integrate the experiential data collected from users into their work and to develop recommendations that made more sense to users.” They also saw that the panel members and INESSS professionals quickly learned how to work more effectively together, moving from a more consultative relationship at first, into collaboration and eventually co-creation of initiatives. They concluded that “the panel helped to humanize the scientific process by bringing to agency professionals the impact of their work on the people concerned.” 26

The panel representatives also felt their input was valued and useful. One panellist quoted in the article said, “I think we've helped the scientists at INESSS acquire new reflexes. Initially, when they quoted the people they had met, they quoted them in this order: managers, clinical experts, and parents [of patients] … Why not put parents first? They're the first to experience problems in the state of practice. I think [INESSS has] understood, and they've started to change the way they present their results.”26 Thanks to INESSS’ commitment to patient-centricity, and the hard work and insights of the panellists, this program has emerged as a leading example of how patient voices can be respected and used – one that other healthcare decision-makers should pay close attention to.

 

PROs and RWE: Gathering the right data

When thinking about “the patient voice,” we need to recognize that it isn’t a single voice at all – every patient and caregiver will have their own experience, perspectives, and priorities. That becomes especially important when figuring out which outcomes are important to a particular person, and how those should influence treatment plans and goals. It’s easy for healthcare professionals to prioritize the hard outcomes of clinical trials like survival and disease progression, but patients may disagree if their treatment interferes with their quality of life (QoL) or the activities they’re able to do. If we want to be truly patient-centric, we need to consider what matters to each person.27

“Normalizing the dialogue around the value of quality of life in relation to survival and other outcomes is a good first step. Especially since everyone deserves a decent shot at living well, no matter what their disease is, or their prognosis.”27

Lisa Machado
Founder, Canadian CML Network

 

So how can we know what’s important to patients? The answer is deceptively simple: ask them! Of course, it’s a bit more complex than that. Yes, part of the discussion lies in the one-to-one conversation between the clinician and the patient. But to get a bigger-picture view on which outcomes are relevant to patients – and to generate data in a way that can be more readily interpreted by healthcare decision-makers – we need to understand how to make better use of patient-reported outcomes (PROs) and real-world evidence (RWE) generation.

PROs and RWE can be hugely important in drugs for rare diseases and other situations where there’s limited evidence from formal trials to support access to a novel therapy – while additional evidence is being generated, QoL measures and other real-world data can help fill the gaps and enable decisions about access. There are lots of international examples to help guide the way – for instance, in the UK, NICE has used RWE to support its decision to fund over 20 medications through a managed access program.28

Unfortunately, we aren’t quite there yet in Canada – but we’re working on it. Here are some examples of organizations who are working to elevate the place of RWE and PROs so that patients’ priorities and goals can be integrated more fully into decision-making.

The Canadian Institute for Health Information (CIHI) is an independent, not-for-profit organization that provides essential information on Canada’s health systems and the health of Canadians. Patient representation is a core part of their culture, because they realize that without the patient perspective, they almost certainly won’t come to the right conclusions. So they embed patients and caregivers in all of their programs, from data generation to presentation – if you go to one of their talks, you’ll see patient representatives as equal speakers and collaborators with the researchers, providing a broader perspective and strengthening the impact of PROs. “Having patient partners co-present with researchers, health care professionals and other key stakeholders truly creates a greater impact, improves the quality of communication and produces an emotional connection, which are all powerful to the work we are moving forward with,” said Ron Beleno, a CIHI patient partner.29

Patients’ role in collecting and owning their own data is being enhanced by the Quebec SmartCare Consortium, an ambitious project spearheaded by the Research Institute of the McGill University Health Centre. The program centres on a patient portal and associated smartphone app called Opal, which was developed with patient input from the ground up.30 Opal is currently the only patient portal in Quebec that provides patients with full access to their health data. The ultimate goal is to provide all its users with “patient-in-the-loop” data – healthcare data that are shared in real-time with the patient (or their informal caregivers) just as they are with the professional members of the patient’s care team. This type of data sharing has been shown to promote patient empowerment, transparency, and shared decision making.31 Right now Opal can provide this level of info for some but not all patients, so the Consortium is raising funding through private-public partnerships to help grow the program and connect as many patients as possible with their own health data.32


The path toward a more integrated and inclusive patient voice

So where do we go from here?

Healthcare decision makers have come a long way but there is still lots of work to be done to help elevate the patient voice and fully integrate it into healthcare decisions. Patients need to be seen as the experts when it comes to their own lived experience – and after they’ve given their input, it’s important for the listeners to close the loop and show how that feedback is being put into action.

For Heather Mitchell, President of LUMA Health Consulting Inc, a patient-inclusive outcomes-centred healthcare leader, industry needs to work on shedding the “check-box” perception by appreciating that everyone benefits when patients are fully heard. “Working continuously with patients to expose their pain points and our opportunities to improve their health outcomes is a win-win strategy and often the key to co-creating a solid foundation of healthcare solutions that are on point for their needs,” she says.

We also need to do more to bring marginalized groups, such as ethnic minorities, LGBTQ+ people, the elderly and people with low socio-economic status, into these conversations. They traditionally haven’t been part of these discussions – which means that even when “patient-centric” changes are made to a system or process, they might not be the right changes to support these groups. Reaching these patients can be challenging so it may be helpful to bring in strategies such as outreach through patient organizations, easy-to-use digital communication tools, and free programs in the community.33

We need to embrace the thinking that having a variety of patient voices at the table isn’t optional – it’s essential. But once they’re at the table, how do we include them in a respectful and effective way? Lisa Machado, lived experience advocate and Founder of the Canadian CML Network offers some tips: essentially, organizations need to be ruthless about embedding lived experience in every decision, and putting the patient at the top of their objectives, instead of at the middle.

She couldn’t have said it better. Now it’s up to all of us to do the work.

Patient engagement tip sheet

Based on her experience, Lisa Machado offers some advice about what healthcare stakeholders should be doing to meaningfully engage patient advocates:

Think integration. From clinical design to communications, be ruthless about embedding lived experience in every decision.

Show them the money. Compensate patients like the experts they are. Always.

Be authentic. Don’t make patient involvement simply a box to check.

Rethink how it looks. Put the patient at the top of your business, instead of at the middle.

Combine experience and expertise. Support the patient voice with medical expertise.

 

References

24. INESSS. Énoncé de vision: Des voix qui comptent. https://www.inesss.qc.ca/fileadmin/doc/INESSS/DocuAdmin/Vision_Participation_INESSS.pdf

25. INESSS. Humanizing Health Technology Assessment Practices: The Institut national d’excellence en santé et services sociaux Users’ and Relatives’ Panel, Oral Presentations 6 - HTA Methods, CDA-AMC Symposium, September 6, 2024.

26. Pomey M-P, et al. How to mobilise users' experiential knowledge in the evaluation of advanced technologies and practices in Quebec? The example of the permanent users' and relatives' panel. Health Expect. 2024 Feb; 27(1): e13964. doi: 10.1111/hex.13964

27. Lisa Machado for Patient Voice. It’s time to acknowledge that survival and quality of life aren’t the same thing. https://www.patientvoice.io/perspectives/survival-and-quality-of-life

28. NICE. Managed Access. https://www.nice.org.uk/about/what-we-do/our-programmes/managed-access

29. CIHI. 30 Years of CIHI. https://www.cihi.ca/sites/default/files/document/cihi-annual-report-2023-2024-en.pdf

30. Kildea J, et al. Design and Development of a Person-Centered Patient Portal Using Participatory Stakeholder Co-Design. J Med Internet Res. 2019 Feb; 21(2): e11371. doi: 10.2196/11371

31. Laurie Hendren Symposium on Patient-in-the-Loop Data. https://www.lhsymposium.com/

32. MUHC. RI-MUHC research team leads new consortium to make healthcare data more accessible. https://muhc.ca/news-and-patient-stories/news/ri-muhc-research-team-leads-new-consortium-make-healthcare-data-more

33. Lisbeth Oxholm Snede. Engaging marginalised patient groups in decision-making: How can we ensure all voices are heard? https://www.linkedin.com/pulse/engaging-marginalised-patient-groups-decision-making-how-snede-uwzac/

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