Patient Experience Data and the Role of Social Media (Part 1)

Patient Experience Data

The 21st Century Cures Act, passed in December 2016, defined patient experience data as data that:

“(1) are collected by any persons (including patients, family members and caregivers of patients, patient advocacy organizations, disease research foundations, researchers, and drug manufacturers); and
(2) are intended to provide information about patients’ experiences with a disease or condition, including—
(A) the impact of such disease or condition, or a related therapy, on patients’ lives; and
(B) patient preferences with respect to treatment of such disease or condition.” 1

Over the next three years, the FDA will issue documents providing guidance on obtaining and using patient experience data.1 Unfortunately the guidance thus far is still vague — Inspire is often asked whether social media posts would be considered patient experience data. For Inspire members, social media posts are often one of the best available data sources.

In the 2016 survey of over 10,000 Inspire members, 47% of respondents indicated that they used online support communities as a data source for making decisions. By contrast, 53% said they used medical or scientific articles. The largest category had 77% of members reporting that they use condition-specific websites and blogs.2

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Insights from Engaged Patients - inspire annual survey report 2016

Increasingly, the social media interactions are becoming more and more important as patients get involved in the decision making process around their health. While structured data sources — EHRs, claims data — are important ways to track patient experience, they lack the true depth of social media sources. Patients will regularly voice that they will talk about things in a community or social media setting that they would not talk about with their doctor. In some cases, it is because they think the issue is too minor to bother their doctor with — maybe a minor adverse event that isn’t getting reported — in other cases, it is because they worry their doctor won’t understand or support them.

From a holistic perspective, the patient journey is not necessarily fully expressed through these other channels either. The average rare disease patient sees 7.3 doctors before they get their diagnosis.3 Those are often across multiple years, EHRs, and insurance plans — there may not be a cohesive sense of the patient from structured data sources. However, their journey is still perfectly expressed through their experience on social media.

As we look to patient experience data, let’s make sure we don’t forget the patient and act to include social media sources of data in our discussions around patient experience data.

Next week, we’ll continue this discussion with Making Patient Engagement Work: Strategic Insights.

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Inspire offers a trusted community to patients and caregivers.  Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice.  In so doing, we support faithful operationalization of patient-centricity.  Take a look at our case studies, eBooks and news outlet coverage.