HIMSS and the Focus This Year On the Consumer Data Economy

Authors Dr. George Mathew, Hu-manity.co Advisor and Milind Shah, Healthcare Data Expert

As we think about HIMSS19, held in February 2019 in Orlando, one has to acknowledge the transformation happening in the healthcare space and the focus that organizations are placing on healthcare today.

For those who have not yet had the opportunity to attend the annual HIMSS conference, which is presented by the Healthcare Information and Management Systems Society(HIMSS), and are interested in learning more about it, the best way to think about the conference is that it’s a platform for thousands of healthcare professionals including providers, practitioners, insurance companies, and technology companies to get together to talk about lessons learned, future transformations, and interesting areas of focus for each party. This is one of the times that an industry that is typically conservative and perceived as being “behind” really shows that they can focus on innovation and the future.

This year, one could see technology companies, product companies, software companies, and several that were new to the equation thinking differently about the value chain and looking to make a mark. Buzzwords such as “patient engagement,” “provider enablement,” “AI/ML,” “robotics/BPA,” and “customer experience” were everywhere, and many companies declared that these would be the most important trends of 2019.

But throughout these conversations, one important piece was rarely discussed or addressed directly: data ownership and data consent.In light of the revelations about Facebook and Cambridge Analytica, this seems like an odd omission. Only one session over the entire time addressed this – the panel on Health Data Monetization and the Data Economy, presented during the Consumerization of Health workshop on Thursday, January 14.

Despite not addressing it directly, this issue came up indirectly in many discussions as healthcare IT leaders discussed future business models. Tuesday’s keynote panel demonstrated an emphasis on “changing the conversation about data” from several of the organizations. From the CEO of Epic who was asked about consumer-driven data sharing and data economy model, to senior executives and thought leaders in CMS who talked about how data will be key in this space, the key issues everyone discussed were:

• Where does the value chain start?
• Who is in control of it?
• Should the patient/member get something for the value of that data?

It’s interesting as we think about this and all the transformation that is occurring because the key to the kingdom is data.If we don’t have timely, accurate, detailed, and specific data about our patients and members, then how are we to leverage all these amazing things in which we are investing around the transformation in the space?

When we talk about claims and clinical data, we’re usually talking about data collected for some other reason (payment, billing/coding, scheduling) that’s being re-purposed for other reasons, such as value-based care or clinical outcomes, and the data generated by and for these systems is claimed by both the EMR companies as well as hospitals.  Older medical devices, newer IoT-based devices, voice recognition devices like Alexa, and others that collect structured and unstructured data send that information directly to the companies that produce them, ostensibly to improve the devices. These companies own the data generated by the bodies and actions of the people who use their products and services.

The rationale for data governance (and cleaning) is because data is gathered without informing the people generating it of the purpose behind collecting it. As more and more digital business models are generated, there will be an ever-increasing reliance on complex data governance and cleaning models to ensure that the data generated isn’t “garbage in – garbage out” (GIGO). In fact, many companies are discussing generating synthetic (“fake”) data as a much simpler way to create the data sets they need to generate productive analytics.

But what if a different way were possible? What if, instead of jury-rigging a hidden, poorly consented system to obtain vital data, companiesneeded to ask for permission?

What if companies asked people for their permission, directly and transparently, and explained what they needed the data for – and paid the individual for sharing their data, which is actually a reflection of them?

After all, to get that type of data companies need, don’t they owe it to people to give them a reason to share their data? Now don’t get me wrong—“saving your life” or other things are great emotional reasons that members would still do this. But what about when the individual is not sick or dealing with a severe chronic disease, but is someone they want to learn from to help prevent these situations in the future?

What if the data were not directly leveraged for delivering care but for learning and helping institutions in the space think differently about the medication that is being created, or treatment that could be offered so when and if that situation occurs they are ready?

This is why all of us need to think differently about this value chain and ask:

• What’s in it for the member?
• Can they get paid?
• Can they get some type of credit?
• Can this very personal and meaningful information that individuals are so willing to share be accurately tracked so companies can offer transparency?

These are all interesting concepts that already have some precedent in the sharing/renting economy such as Uber and AirBnB, and will have to be adapted for data sharing. The key will be how we can insert the individual in the middle, and structure both transparent consent and transparent use of the data. Currently, these major decisions on how to use and even monetize our data are being made for us with little transparency – and this will have to change.

We have the opportunity to take control, make these changes, demand to be asked for permission, and most importantly create the transparency that’s vital to establishing trust and ushering in the benefits we know are possible.

This our chance to declare our 31^sthuman right: A person’s data is their private property. No one should have the right to take, exploit, or profit from an individual’s data without their permission.