Handle with care: Lisa Machado on the wise use of patient data
October 17, 2020
Twelve years ago, after a life-changing diagnosis of chronic myeloid leukemia (CML), Lisa shifted her career focus from financial journalism to healthcare advocacy and education. In 2014, she founded the Canadian CML Network, a non-profit organization working with CML patients and their healthcare providers throughout Canada. Early this year, Lisa became the Executive Producer at healthing.ca, a website that helps patients optimize their health in the midst of chronic disease. In this candid interview, Lisa shares her nuanced views about patient data.
What led you to become a patient advocate?
Before my diagnosis of CML, I had a black-and-white view of cancer: either you die of it or you get cured. But I learned that cancer means uncertainty— advocacy was my way of taking back some control in my life. As I reached out to more people, I realized I wasn’t the only one struggling. One thing led to another, and I began participating in policy meetings to explore how people live with rare diseases. This work has helped me move forward.
Everyone is talking about patient data these days. Do you think it is being used correctly?
We still have a way to go. For example, patients aren’t always kept abreast of how their data is being used, which is a missed opportunity to build trust. Real-world data also needs to reflect the socioeconomic and ethnic diversity of the patient population being served, and this isn’t always happening.
How do you feel about sharing your own data with healthcare stakeholders?
On the one hand, I think it’s great that my experiences are being used to improve the care of others. But I also worry that the information will be shared in a way that isn’t helpful. And privacy is always a concern, of course.
Is privacy an issue for most patients?
Yes. Many people worry they won’t get hired or will be laid off, for example, if word gets out that they have an “expensive” disease. Others hesitate to share information with PSPs, such as side effects, because they fear support of their treatment may be stopped if they complain.
How might the industry address such fears?
Transparency is key. It should be made clear that any personal data will be de-identified and never be used against them. That’s not to say that everyone will be convinced, but there is definitely room for the industry to have more open conversations to gain trust and foster confidence.
What do you think about measuring a drug’s performance based on patient health outcomes?
Once again I’m of two minds. Data from EMR records can help us decide where to invest our healthcare dollars, and real-word data can give a boost to high-performing medications. I fully support these ideas. At the same time, I worry that data could be used to limit access to drugs that benefit only a small pool of people. If the drug works, we should be funding it.
How would you hope your data would be used?
Ideally, my data would be used to show that taking a chance on an expensive drug can not only make lives better, but also make important differences elsewhere. For example, some drugs for CML are now being used for other diseases.
What is the value of PROMs?
PROMs give us valuable insights into what it means to live with a disease. You might learn that many patients on a certain drug get up every night or have panic attacks, which you wouldn’t necessarily discover from clinical data. Used intelligently, PROMs can help us figure out how to improve patients’ quality of life.
What role do PSPs have in collecting data?
PSPs are a natural vehicle for data collection because they have a built-in patient pool. That said, I would like to see PSPs do more than passively collect data from patient surveys. In my experience, exploratory one-on-one or group conversations yield higher quality feedback than surveys. Industry and their PSP provider partners have an opportunity to engage patients as active partners whose feedback helps improve the treatment experience.
What is preventing patient data from being used more extensively and holistically within the specialty medicine ecosystem?
I come back to transparency. A while back, the Canadian Medical Association surveyed patients on their attitudes about data. The patients did not object to sharing data on principle—they just wanted to know how it would be used and by whom. Patients want to know what happens after they agree to “donate” their data. That’s the missing piece.
What do you see as the future for health outcomes data?
I hope to see this area grow. Not a week goes by when we don’t hear about a rare disease that needs drug funding. As we move forward, we have to ensure the data we collect is being used to save lives. That’s the goal.