AmandaSheldonMedtronic“By bringing together key stakeholders who can talk to the needs of patients, manufacturers and entrepreneurs, we aim to tackle both the promise — and the risks — of maximizing the wealth of health information generated online.”

Excerpt from SxSW Panel Description: Why HIPAA Won’t Save You

I was pleased to get a chance to talk with Amanda Sheldon this week in advance of her debut panel at SxSW next weekend. Like many of the health track panels this year, Amanda’s group is going well beyond the “wearables are cool” stage and actually starting to answer some of the really hard questions that go along with all of that health data.

The panel, entitled Why HIPAA Won’t Save You: Protecting Data Privacy, will be at 5PM on Saturday March 14 at the JW Marriott. The mix of participants is also really interesting. Joining Amanda, who represents the manufacturers of the kind of health & medical equipment that’s actually generating health data, will be joined on the stage by Manny Hernandez, one of the leading ePatient advocates for people with diabetes and Jane Sarasohn-Kahn, a health economist and one of the leading macro-thinkers about our transforming health system. Moderating the panel will be long-time healthcare communications pro Marc Monseau.

“There’s been so much more attention on how cool it is to be able to generate data for better health from wearables and devices, but what are the potential downstream impacts? There are so many new entrants into the healthcare space who, while they’re providing a much-appreciated spark of innovation, don’t necessarily have the industry experience to understand how different health data is.”

Amanda Sheldon, Medtronic Diabetes*

With more than 60 years of experience in the device industry, Medtronic knows how critical some of those issues are – even if they may not seem as “sexy” as the devices themselves. “Take something as mundane as a data retention policy,” continues Sheldon, “should we just be storing this patient data forever? What if, at some point, they stop using the device generating the data?”

Her team at Medtronic is also concerned with the patient’s experience in dealing with health data. Today, Web sites and applications include the privacy policy which describes what the device company will do with the data, how it will be stored, etc. But in the past, those agreements have been so opaque that it’s nearly impossible for a patient to really understand what it is that they’re agreeing to.  But Sheldon doesn’t believe that it has to be that way. “At Medtronic, we’re constantly working on simplifying and summarizing the language in our statements of use – including whether or not the patient can opt out of sharing their data.”

Over the years, Medtronic has developed an incredibly strong understanding of how patient behavior – and the data associated with it – relates to better health outcomes. That has enabled them to continue to develop products that make it easier for patients to improve and maintain their health. They’ve also shared aggregated patient data with non-profit research and advocacy organizations to help their own patient-centered research to be more relevant and accurate.

There’s no question that health data will continue to proliferate, but it’s good to know that companies like Medtronic are committed to taking a leadership role in the industry to ensure that every patient’s data is as usable as it can be for patients and their doctors to help them stay healthy – but that the data itself stays safe too.

Connect with Amanda Sheldon on LinkedIn and Twitter (@ams9)

Connect with Medtronic Diabetes US on twitter (@MDT_Diabetes), YouTube, Facebook and their blog – The Loop.

*Medtronic is a client of the W2O Group