The Road to Data Dividends
Sometimes, you assume that every cool idea you have has been done before.
Once in a while, when it seems like a great idea, you take a look to see who has done it.
And once in a blue moon, you see that no one has.
Then, you start to wonder what everyone knows that you don’t. Probably, there’s an obvious problem with your idea, and you’re just naive enough not to see it.
And then, the idea occurs to you again, a few days later, and a few days after that. You can’t shake it, so you mention it to someone. They think it’s a good idea, too — no one has done it yet?
On it goes, until one day, you see a Nike billboard, and the impossibly fit model with the impeccable black-top shoes looks you in the eyes and you say, screw it.
So began the project that came to be known as Data Dividends.
It sprang out of many Kara Swisher podcasts, frustration over the amount of talk with no accompanying action in digital health, and the conviction that something has to be done to make some sense out of the wildly opaque, patient-last world of healthcare data. My co-founder and I had a long discussion last winter about the elusive net-positive startup — there was some of that in there, too.
The resulting idea is simple — people who faithfully track their observations in Folia and opt to contribute the sum of their experience to our research program should be recognized as a vital part of the process. Their knowledge is incredibly valuable. Yes, using Folia will have a direct benefit on their care, but it also has the power to impact the development of better care plans for many others. For too long, the knowledge of patients and caregivers has been relegated to the bottom of the health data totem-pole, passed over in favor of insurance receipts that pay no mind to the outcomes of care experienced at home, away from the fluorescent lights and 40-minute waits of the point-of-care.
Okay, so Data Dividends is called for. Where next? First and foremost, we needed to know how patients and caregivers would feel about this idea. (Step 1: Be cautiously NOT paternalistic.) Although resources are scarce at our early-stage startup, we developed a two-month plan to validate the idea. We asked for feedback from our members, from prominent voices in the disease communities that we serve, and even from a from an ethicist or two. We conducted a thorough review of the existing literature, and were shocked by how little there was.
For too long, the knowledge of patients and caregivers has been relegated to the bottom of the health data totem-pole, passed over in favor of insurance receipts that pay no mind to the outcomes of care experienced at home, away from the fluorescent lights and 40-minute waits of the point-of-care.
Then, we pulled together all the feedback and got to work designing the program. We wanted to make sure that we only rewarded members who tracked regularly, since this info is most helpful for research. But we didn’t want to change the way that our great trackers were tracking — we wanted to describe it. This way, Data Dividends would be a recognition of the contribution that our members were deciding to make. We figured out that there was a pattern to active tracking — and we created our Data Dividends framework around it.
Fast-forward a few weeks, and today’s the day.
We proudly announce that today we become, to our knowledge, the very first digital health company to recognize the enormous contributions that patients and caregivers can make to our collective healthcare dataset through a data dividend.
We call on others to adopt a similar principle — and we’ll be working on a common pledge in the coming weeks that makes this commitment explicit.
More to come, but for now, please know that your experiences as a patient or caregiver are valuable and helpful. Your knowledge matters, and the development of precision care depends on you.
