• Ben Heywood is president and chief privacy officer of PatientsLikeMe, an online patient network and real-time research platform that allows patients to track and share their experiences and data with each other and with those working to understand and improve treatment for diseases and conditions. A PatientsLikeMe co-founder, Ben has overseen PatientsLikeMe’s growth at each stage, including financing, expansion of patient communities, business partnerships, and product strategy. NQF spoke with Ben about how PatientsLikeMe has changed healthcare and its new collaboration with the National Quality Forum.

    NQF: How has PatientsLikeMe’s health data-sharing platform improved patient care?

    BH: We have seen the impact both on the individual level and more broadly. One of my favorite stories is that of a PatientsLikeMe member named Letitia Browne-James. Letitia had epilepsy and suffered debilitating seizures since she was a child. The primary thing she learned after joining PatientsLikeMe was that there are doctors called epileptologists who specialize in epilepsy treatments. Letitia saw one and has been seizure-free since she had surgery. She’s now helping a teenager who also has had surgery and is now seizure-free. There’s a real opportunity through PatientsLikeMe for people who are getting the right standard of care to share that experience with others.

    More broadly, PatientsLikeMe has been working with the Food and Drug Administration to help regulators think about how patient-reported and patient-generated data can be used for drug safety and surveillance, among other things. In the last year or so, we also have seen increased interest from care providers to understand how a platform like ours can be used to make better care decisions in the context of a provider-patient relationship. For example, we’re working with Partners HealthCare to look at how to use platform data for care of patients.

    NQF: Until recently, measurement in healthcare hasn’t really reflected patients’ perspectives. How is that changing?

    BH: There’s been a sea change in understanding and thinking about the potential of patient-reported health data recently. The healthcare community is now open to the value and usefulness of this information—a phenomenon that’s driven in part by the emergence of wearable consumer devices. People are starting to understand that there’s a lot of potential to use patient-generated information, and specifically patient-reported outcomes, to improve healthcare and enable patients to take better care of themselves.

    NQF: Can you tell us about PatientsLikeMe’s new effort to develop patient-reported outcome measures? What do you hope to achieve?

    BH: We’d like to realize the potential of patient-reported health data and patient-reported outcomes, specifically, to have what patients need and value drive healthcare. With support from the Robert Wood Johnson Foundation, we are working with the NQF Measure Incubator to develop measures that capture what’s important to patients—from their day-to-day experiences like living with pain to how they are functioning after surgery, and more. We hope that these metrics help patients and their physicians make better healthcare decisions and spark improvements, including through how providers are reimbursed.

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