Patients, projects, and data points: Eva Villalba connects the dots
October 17, 2020
It’s not for nothing that Eva’s colleagues call her a “dot connector.” As Executive Director at The Quebec Cancer Coalition, an umbrella group of more than 60 nonprofit cancer organizations in Quebec, Eva constantly looks for opportunities to catalyze partnerships and joint projects. On the volunteering circuit since age 12, Eva spent more than a decade working in palliative care, where she cut her teeth on policy work. Along the way, she obtained an MBA and helped to shape public policy in oncology through her involvement with patient advocacy groups. Here, Eva applies her sharp mind and big heart to the challenge of collecting and using patient data in Canada.
How is the Coalition helping to catalyze the use of patient data?
We see our role as raising awareness of the need for patient data. We have been pushing the government to update our current Quebec Cancer Registry, which is 8 years behind in its data. We would like the registry to be as up-to date as those in Ontario or Alberta, to include predictive data, and to be accessible to researchers and decision makers. We are also big fans of value-based healthcare (VBHC) as a way to modernize cancer care in Quebec and make decisions based on what’s best for the patient, not only the system. Patients don’t want more healthcare, they want more health.
How do patients feel about sharing their data?
It all depends on how you broach the question. If you ask them to share their data so it can be sold to industry, they will say no. But if you frame the request as an opportunity to help patients and society, 99 percent will gladly agree. Of course, you have to assure them of complete confidentiality.
How does VBHC intersect with cancer treatment?
Meaningful treatment outcomes go far beyond progression-free survival: for example, one patient may be concerned about preserving fertility, another about preventing incontinence. A VBHC approach ensures these personal priorities are included in the treatment pathway. This year, in collaboration with The Conference Board of Canada, we will be looking at how VBHC can improve outcomes in colorectal, lung, and breast cancer.
How could VBHC benefit treatment at a systems level?
Some of the most effective medications on the market are currently offered third-line, after a patient has “failed” standard treatments. RWE would help quantify potential problems with this stepwise paradigm, which can cause a drain on resources, lost productivity from extra hospitalization, and increased individual suffering. In some cases it may be more cost-effective to use the best medication first, even if it costs a little more. This is something that VBHC can demonstrate.
Tells us about your research study on PROMs.
We will be conducting patient focus groups using a method that encourages free expression. We plan to divide patients into segments, which is very important because even among the same cancer type, different populations (for example: different age groups, stages of cancer, rural/urban dwellers) have different needs. We will communicate the results to patient associations and regulatory bodies so they know which outcomes are most important to patients. For example, fatigue tends to be very debilitating in ovarian cancer and should be included as an outcome in ovarian cancer trials.
Should patient support programs (PSPs) be collecting patient data?
PSPs are ideally positioned to collect data as they have regular contact with patients. I support a model in which such data should be shared with public authorities so it benefits all patients. Some PSPs have begun collecting quality-of-life data, but the practice is still in its infancy. I think manufacturers will be willing to invest more in this area when they have clarity that regulators will consider patient data in their drug assessments.
What roadblocks, if any, are preventing patient data from being used to its full capacity?
Quebec has a highly entrepreneurial private sector, but the public sector has been slower to embrace change. The COVID-19 crisis has proven that we can act fast when we need to, such as setting up telehealth in a hurry. If we can do it for COVID, we can do it for cancer.
The Quebec Minister of the Economy recently announced the possibility of giving industry access to RAMQ data. Is this a good idea?
The confidentiality issue wasn’t properly addressed in the announcement, so many people reacted negatively. That was unfortunate, because access to RAMQ data could lead to better clinical trials and treatment decisions. For example, we may learn that patients on a certain immunotherapy survive X months or years longer than on standard treatment. Hopefully the government will communicate more clearly about the proposal going forward.
Does it make sense to evaluate specialty medicines based on real-world outcomes?
Yes. The precision treatments being developed today often target very small populations, making it difficult to conduct phase 3 clinical trials. It makes more sense to allow conditional drug approvals based on RWE from patients with special access. We are encouraging the government to look at this paradigm more seriously.
How do you see health outcomes data evolving over the next five years?
We would like to see RWE tied to reimbursement as we believe such risk sharing helps ensure the fairness and sustainability of the health system. Other parts of the world, such as Australia and Europe, are further ahead in this regard. We don’t lack the expertise here in Canada—we just need the political will to make it happen.