Sally Okun: Using Digital Health Improvements to Include the Patient Voice in Healthcare

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Sally Okun, RN, MMHS, vice president, Policy and Ethics, PatientsLikeMe, discusses how digital health improvements help include the patient voice in healthcare and how the United States' use of real-world evidence compares with how it's used in other countries.

Transcript

How have digital health improvements help to include the patient voice in healthcare and healthcare decision making?

I think healthcare, in general, hasn’t done a particularly good job integrating the patient voice to date. So, digital technologies give patients an opportunity to really be an active participant, to have a role in being able to use technology and use tools that are in their command and their control, and then bring that information into an opportunity with their clinicians to better understand what’s actually happening in their health and healthcare.

A good example is we did a projected with people with Multiple Sclerosis (MS), using a Fitbit, and for most of us who are healthy, using a Fitbit comes down to counting steps and seeing how many we can achieve, and competing with other people. For people with MS, they were finding that it was helping them better understand the threshold that they could reach before becoming too fatigued, and so it was a way of being able to actually modulate their symptoms and have control over something that they previously would have had to guess at, saying, “I could only go so far before I get really tired.” Now, they had a good benchmark and could monitor that over time.

How does the United States’ use of real-world evidence compare with how it’s used in other countries?

It’s interesting, in the US we passed the 21^st Century Cures Act a few years ago, and that actually has very specific language in it that’s requiring and mandating various parts of the HHS Agencies to begin using real-world data and to begin using patient-experience data. This has been, I think, a real driver for industry, for device makers, and for others, even regulators, to really try to figure out how we then start to use this. I think we have been accelerating the process by virtue of the Cures Act, which has been helpful. But I also think that there have already been some early adopters thinking about this kind of evidence in some of the industry and pharmaceutical companies in the last number of years, and so they were beginning to set up real-world evidence divisions and teams. I think they were prepared when some of the legislation started to give them an opportunity to actually act on that.

As far as other countries, one of the challenges for the US is we have a multi-payer system. When you’re in a 1-payer system, the data that’s coming in about any individual patient is coming into 1 record for the most part, so I think it’s a little bit easier to then bring that data together in a coordinated, collaborative way, to paint that holistic picture without having to go through the data linkages that we’re going to have to have in the US with data coming in from so many different sources. Now, other countries, even with the 1-payer system, will still be challenged with novel device information, data that’s coming from devices we haven’t traditionally integrated into the healthcare data sets. So those will still be a common experience, but I think globally, people are getting more and more excited about the opportunity that digitization of data can offer once we begin to really harness what that data can then turn into in terms of evidence.