Has the “Gimme My Damn Data” movement reached a tipping point?

It’s been nearly ten years since Dave deBronkart was invited by Gunther Eysenbach to keynote the Medicine 2.0 Congress in Toronto. Eysenbach, a medical doctor and health informaticist, was putting the final touches on the conference program and had phoned Dave to ask him what title he wanted to use for his upcoming speech.

Dave deBronkart and Gunther Eysenbach at Medicine 2.0 2009 congress in Toronto. Photo by Gunther Eysenbach

Dave paused. He wasn’t thinking of keynotes or conferences. He was still recovering from a life-changing battle that had begun two years earlier following a diagnosis of Stage IV kidney cancer. He had undergone surgery to remove his kidney and had been enrolled in a clinical trial for a new protocol that used a high-dose Interleukin-2 (HD-IL2). The treatment was harsh and often didn’t work. But it worked for Dave. He beat the odds and came to be known as “e-Patient Dave,” one of the world’s most recognized and respected patient leaders.


A movement is born

So, when Eysenbach reached out about the title for that upcoming keynote, Dave was beyond distracted. He was coping with a high-pressure day job and the added financial burden cancer had imposed. Life, he said at the time, felt like it was spinning out of control. “I really couldn’t think,” he added, looking back. Exasperated, he told Eysenbach, “I don’t know! For now, just call it ‘Gimme My Damn Data, because you guys can’t be trusted’.”

Unbeknownst to Dave at the time, that title would eventually morph into the moniker for a new patient-led movement. “Gimme my damn data” became a rallying cry for a passionate group of patient leaders advocating for access to – and control over – their personal health data.

Patient advocates Casey Quinlan, Regina Holliday and Danny van Leeuwen were among many early leaders of the movement and instrumental in promoting the newly-established Society for Participatory Medicine, a nonprofit organization created to promote data sharing and ownership as central to its mission of medicine as an empowered patient/provider partnership.

Progress was slow but significant. Among the wins, securing “Meaningful Use” provisions that created incentives for the adoption of electronic medical records. Today, 95% of U.S. hospitals have adopted EMRs and more patients than ever have access to their records in electronic form.

But there’s one aspect of this movement that remains fiercely resistant to change: Your health records and data still are not your property. When your healthcare provider collects health data from you, they own it. Not you. Same is true with your pharmacist and your health insurance company. And all of them are free to sell that data to brokers, who in turn sell it to companies that use it for medical research, marketing or other purposes completely beyond your control.


Data is the new oil

This health data market is massive. Estimates put it somewhere between $150 billion to $200 billion, roughly twice the size of the U.S. auto industry! But here’s the rub: Even though that’s your data being sold, you have no right to a piece of the action.

That strikes a lot of people as patently unfair. As ePatient Dave said: “If they extract something from me and sell it to others, they’re treating me like livestock.”

Or as Casey Quinlan stated bluntly in a post last year, if my data is getting sold, “Cut. Me. In. Bitches!

Giving consumers a cut is precisely what a new generation of startups have in mind. A slew of new companies are scrambling to bring new solutions to market that promise to give you greater control over your personal health data. This includes not just the ability to determine who can access your data, but on what terms.

For example, you could choose to share it freely with a nonprofit medical research foundation, but request to be paid by a drug company or medical device manufacturer. In either case, control is the operative word.

Companies like Hu-manity.co, Embleema, BetterPath, Timicoin and Killi are among the growing number of startups entering the data management market. All are built on a similar premise: Your personal data is an asset with inherent value. (If that wasn’t the case, companies wouldn’t be selling it.) If it’s sold, then you should get your fair share of the cut. Think of it as the “pay me for my damn data” movement. (For the record, Dave deBronkart and many others who spearheaded this movement have not formally endorsed any of the companies referenced here).


The new kid on the digital health block

Virtually all of these companies are leveraging blockchain technology with a goal to enable individuals to seamlessly and securely claim their data, move it around the data ecosystem, and authorize who can use it.

Like many patient leaders, we’re following these companies with great interest and digging in to better understand their business models, leadership teams, patient compensation schemes, technology platforms, and other aspects of the business.

Some are more transparent than others, but one thing is clear: Blockchain technology is making data management very real and far more practical than it has ever been. Most of us know blockchain as the backbone for online cryptocurrencies such as Bitcoin and Ether. But with millions of users globally, the technology has matured to the point where forward-thinking entrepreneurs can find uses for it well beyond the financial services industry.

And that’s precisely what’s happening.

Earlier this year, we began working with one of these companies – Hu-manity.co – after the co-founders reached out to us to explore opportunities to collaborate with patient opinion leaders. The co-founders, Richie Etwaru and Michael dePalma, both came out of the healthcare industry and both were eager to glean insights from patient opinion leaders in the WEGO Health network.

In the weeks ahead, you may see social media posts from us that are intended to let the world know how to download the Hu-manity.co app. We believe this movement, and the potentially game-changing technology fueling it, is too important to our members for us to stay safely on the sidelines. We’ll learn together what questions need to be answered, and what patient leaders think about one of the first offerings on the market.


Why did we start with Hu-manity.co?

The mission and vision behind Hu-manity.co resonated with us and with many patient leaders in our network. Hu-manity.co seeks to take the concept of data property rights to a new level. It has launched a novel #My31 campaign that declares, “Everyone has the right to legal ownership of their inherent human data as property.” The company is proposing that data ownership be deemed the 31st human right, adding to the thirty rights currently recognized by the United Nations and bestowed to every human at birth.

Like other natural resources, Hu-manity.co believes human data is now more than ever a source of massive value. As such, once ownership of your data is claimed as an individual property right, it can be shared, sold, or exchanged in an open market. Or, just as importantly, it can be yours to put under lock and key using the company’s #My31 app.


Early learnings

This summer we used our Truvio mobile platform to convene fifteen patient opinion leaders, some of whom were early champions of the “gimme my damn data” movement.1 We posed several questions to the group, all aimed to better understand how this concept is perceived and valued. We wanted to learn whether patient leaders would be interested in using an app that offered not just greater control over health data, but the option to monetize it as well.

We quickly discovered that interest in these data management technologies is very high. In fact, support for the Hu-manity.co concept was unanimous. At the same time, several important questions were raised about how Hu-manity.co and similar companies make money, how transparent they are about their business model, what the compensation for patient data will be, and whether these companies can themselves be trusted in an industry littered with false hopes and empty promises.

We see our work in this space as integral to our learning process. We’ll share what we learn with Hu-manity.co, as well as with others offering similar solutions. Early next year, we’ll also share findings from a survey we’re running in partnership with the research company, Ipsos, to better understand how the patient community views these solutions. The survey is sponsored by HIMSS Personal Connected Health Alliance, which has taken a keen interest in applications of blockchain in healthcare.

So, while there’s much for us to learn, there’s one thing we do know: ePatient Dave’s keynote wasn’t just a hit back in the fall of 2009. It was the start of something big – a movement that in due time will change the way millions of newly-empowered patients manage, protect, and value their personal health data.

1 In 2012, at the suggestion of Ross Martin, MD, “Gimme my damn data” was renamed “Gimme My DaM Data,” to represent “Data about Me.”

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