Our very own Michelle Leeds was featured in a recent MM&M piece, alongside a number of our Syneos Health colleagues, discussing how today’s radically transformed market landscape impacts pricing, access and an overall commercialization strategy.
Patient data: Can't live with it, can't live without it
Over here at TWTW-headquarters, we’ve got a knack for seeing risk wherever we look. This makes us very fun at parties. It’s also made us increasingly wary of data privacy in healthcare, especially when it seems like every day there’s a new health-tech product or partnership.
Of course, we’re far too polite to ever say “told you so,” so instead we’ll just refer you to the subject line of Rock Health’s weekly newsletter: “The healthcare techlash is here.”
At the center of that backlash is, unsurprisingly, patient data. In their analysis, the Rock Health team found that patients are becoming increasingly wary of sharing their data with healthcare entities.
Based on recent reporting, there’s little reason to think patient trust is about to start trending upwards. Just take a look at some recent data snafus:
- The University of Chicago and Google are facing a class action lawsuit, alleging that they shared identifiable patient data. The allegation stems from a 2017 partnership between U Chicago and Google, which intended to “use patients’ electronic medical records to try to make better predictions and advance artificial intelligence in medicine.” The patient data shared by U Chicago included doctor notes and check-in and check-out dates.
- The DNA-testing service Vitagene, left more than 3,000 client health reports accessible to the public via Amazon Web Services servers for years. The records included “customers’ full names alongside dates of birth and gene-based health information, such as their likelihood of developing certain medical conditions, a review of the documents showed.”
- “Sleep apps” and “smart beds” – tools designed to help people get a better night’s sleep – have come under fire for their ambiguity about data sharing. Unease with these tools only increased after Sleep Number’s CEO Shelly Ibach spoke at the Fortune Brainstorm Health conference and noted that user data is critical for the company’s algorithms.
New policy efforts:
New bipartisan legislation, the Protecting Personal Health Data Act - was recently proposed in the Senate. The bill would put new regulations on wearables, apps and genetic testing kits. It would also establish new requirements for companies “to let patients access, change, and delete health data.”
Potential industry impact:
For most actors in the healthcare space – be they small healthcare startups, established insurance providers, pharma companies or Big Tech dabbling in healthcare – data is becoming increasingly critical for business success. If patient trust in these groups’ ability to protect their data continues to decline, these entities could see their innovation and growth stifled.
Some advice from your fave party guests:
- Transparent communications about data collection, management and protection can’t be an afterthought. A company’s approach to data must be communicated directly with every new initiative.
- Don’t leave any “grey area” when it comes to your data policy or what you communicate to patients and partners.
- Explain why collecting and sharing data is important. Will it help better treat patients in the future or diagnose conditions earlier? Will it improve outcomes for the very patient sharing their data?
- And – for good measure – some time-honored parenting advice: treat others[’ data] how you’d want [your data] to be treated.
Who wrote this? The managing editors of TWTW are Dana Davis, who can’t even get phone service on an Amtrak and Randi Kahn, who found a 2002 AP Style Guide book when moving apartments this week.
Syneos Health Communications' Reputation & Risk Management Practice is a team of healthcare communications consultants, policy-shapers and crisis response specialists. We provide unique solutions to the evolving communications challenges in today’s healthcare industry, using evidence-based approaches to help our clients successfully navigate the most sensitive of situations.
Got thoughts? Contact Dana
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