I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes. This comment was posted in 2011 and I’m featuring it now because it is an example of how we, as a health data community, have been — and need to continue — discussing a power dynamic that flows in multiple directions.
Steve Downs, in response to “Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious.”
There’s such a fantastic opportunity to harvest individually generated data for insights and new knowledge. I’d like to think that researchers would be drooling over the possibilities, though I’m not sure. Realizing this potential still runs into limitations: islands of data don’t connect; data are locked up as business assets; people with data don’t always have an easy mechanism to share it.
Your post inspired me to think about this last challenge. The research by Weitzman and Mandl suggests that under the right conditions, people will choose the path of information altruism. So then part of the challenge is to make that choice not theoretical. but highly practical — or easy. In effect, a “green button” that says “share it.” Obviously there’s a lot that goes behind that — making sure people understand the choice they’re making, having a infrastructure that can receive such “donations” of data, but you get the point.
(Read the 2011 responses and add your thoughts, either to the original post or below.)
Note: The featured image is the “Donate Your Data to Science” Care Card created by Involution Studios.
e-Patient Dave says
Since we’ve made very little progress in six years, I’m dying to know what the “right conditions” are!
(I have opinions and hypotheses but I wonder what Steve proposes.)
Steve Downs says
Dave, sorry for the delay on this. I think the short answer is that we haven’t progressed enough on the conditions. It’s far from easy, it’s far from seamless (despite progress in examples like Research Kit and Open Humans). To me, the question is why we haven’t progressed enough. I don’t see a green button on the FitBit app. My suspicion is that it’s a combination of both the coordinated, collective action it would take and the lack of desire and/or incentive for any one (powerful enough) group to push hard for this.
But I really want to hear what you think 🙂
Susannah Fox says
Thanks, Steve! The conversation is never over. Anytime is a good time to re-engage!
e-Patient Dave says
> But I really want to hear what you think
A deep, complex question, as I’m sure you know, Steve … I’ve been on my own to study such things, with near zero fiscal and organizational support from funders (just speaker fees). So my thoughts are my own for better or worse, and they generally get disagreed with anyway, so what the heck. 🙂
Funny that people are happy to hear me talk about my thoughts but not happy to help me have them or advance them.
(Three conspicuous exceptions were my Mayo visiting professorship, the patient engagement fellowship at NEHI (both 2015), and patient engagement fellowship for Spark/Revera in New Zealand – company that’s VERY interested in helping data move around.)
Anyway: you note Weitzman and Mandl. Google Scholar leads me to guess you might mean this Spring 2010 paper on early PHRs? Boy, they were probably writing that BEFORE my own Google Health disaster in March 2009!)
My own two cents, backed by no research, is that I agree with the article’s conclusion on users’ ability to control the sharing, and trust, and safety monitoring. But here we are 3/4 of a decade later: app developers (and Jolly Green Giant Apple) are still playing the “knowledge is power” game, loath to make it easy for us.
I can say from personal experience that one force holding back progress is my hospital’s CIO, John Halamka, who said on his blog last year that patients don’t WANT to be involved with their data, including this:
So here we have one of the most-listened to authorities in health IT telling his readers, “There’s no reason to encourage an ecosystem, because there isn’t any ecosystem.”
Given that this was a post praising Apple’s HealthKit, which that hospital is very committed to, there may be other motives for discouraging open, user-controlled sharing through the Meaningful Use rules about View/Download/Transmit, but I’m not a mind-reader.
More revealing to me, though, is that the paragraph also included this:
“What???” I thought; “Did I miss the announcement of some new ability at my hospital, to download my whole record??”
Nope. As I then blogged in Dear John: *I* want to download my records, it turns out they don’t HAVE such a capability. (Go see the screenshot of the tech support response.)
So I don’t know what game is going on here. I do know that IMO the above is a smokin’ gun about at least one source of resistance to data sharing: him.
Note too that my hospital also doesn’t offer any way to IMPORT my data from Fitbit etc – I imagine the idea is to handle that via Apple’s Healthkit, which will of course be of no use to the majority of humans, who don’t have and/or can’t afford Apple products.
Susannah Fox says
Dave, you’re right. On many counts.
First, yes, Steve’s comment refers to that 2010 article by Weitzman & Mandl because I linked to it in the original post (sorry, this conversation is becoming like a Russian nesting doll!)
Second, yes, John Halamka’s comment deserves to be called out and repudiated, just like Joe Biden called out and repudiated Judy Faulkner’s comment on health data access.
Quote from Politico:
“Epic CEO Judy Faulkner asked Biden during an (until now) private meeting between EHR executives and administration officials, ‘Why do you want your medical records? They’re a thousand pages of which you understand 10,’ recalled Greg Simon, who worked on the moonshot and is now president of the Biden Cancer Initiative. Biden responded, ‘None of your business,’ according to Simon, who detailed the conversation during a MedCity conference in Philadelphia. ‘If I need to, I’ll find someone to explain them to me and, by the way, I will understand a lot more than you think I do,’ the former VP said.”
I don’t know what game is going on here either. Is it lack of imagination? Is it paternalism? Something else?
The whole point of the health data liberation movement championed by Todd Park is to let everyone – including patients – help.
Quote from Fast Company:
“The origin of the Health Data Initiative is actually a pivot. When we were first figuring out how to use the health data, our instinct was to build our own set of tools–experimental prototypes. Then we had this eureka moment: That’s not right at all. It’s not about the tools we can build; it’s about the tools everyone else can build.” – HHS CTO (and then White House CTO) Todd Park
It was my honor to serve as HHS CTO and continue that work, looking for new ways to build the ecosystem for health data, knowing that the more spigots we opened, the more innovation would flourish, whether at the individual, practice, or system level.
For those just tuning in to the federal government’s open data initiatives, read up on the history of the HHS Office of the Chief Technology (PDF) and the first apps created with HHS data. We didn’t know what people would do, but that didn’t mean we shouldn’t try!
If this was a cooking show, that was all the messy “before” with flour everywhere. Now the host would bring out these perfectly roasted dishes and everyone would agree that it is indeed possible to liberate data and see an ecosystem bloom:
Dan Munro says
I think this discussion misses the mark in key ways. Remember when Dave was finally able to import his health data into Google Health? As memory serves (Dave please correct me if I’m wrong), the data was far from clean or accurate (including even gender) and consisted of a lot of billing data. The “data” as it existed wasn’t remotely consumer friendly or really consumer usable.
And that’s the key point to this whole discussion. The EHR systems we (still) have were purpose-built as billing engines. They’ve added clinical data (with varying degrees of success), but they’re still BIG billing engines. Clinical data has been bolted on. Sure, billing data has value to patients – but it’s heavily dependent on the billing coders who are (let’s be honest) compensated for maximizing revenue. There are whole courses and degrees on medical billing/coding. In our system, medical billing/coding is a very real profession.
In fairness, Judy was never given the opportunity to rebut Biden (he just shut her down), but that was (I believe) her real point. I’m NOT defending Judy – but I understand how the software was designed – and how our system isn’t broken but how it’s working exactly as designed. We want Judy (and EHR vendors generally) to be accountable to US as patients – but we’re not the (sometimes 9-figure) buyer.
The fact is, our whole system has been optimized for revenue and profits – and that includes the software designed to support the economics of healthcare. It’s basically highly specialized accounting software. Alos, no one is being prevented from building a different software solution or EHR – one that’s more consumer focused – but who would pay for that? For a while, there was an iMac EHR that was Apple-elegant, but it was more expensive – and THAT contributed to its demise.
Also lost in all the translation are second order costs to ALL software. First order costs are those associated with building and then maintaining the software. Second order costs are those associated with data liability – and THOSE aren’t trivial in healthcare. Facebook data is of low risk (and as free users – we all easily agree to release any and all of FB’s liability) but clinical data has (potentially) 7-figure liability. If Hospital/Provider A creates the original data, they’re comfortable with managing and maintaining that data FOR THEIR use. When that data is then transmitted to Hospital/Provider B, Hospital/Provider A needs a fairly iron-clad release of liability on that data (including timestamp). Those legally binding agreements around liability aren’t automatic and cannot be assumed.
None of this is trivial – and I’m not convinced we’ll make substantive progress (at scale) until we (inevitably) get to single-pricing healthcare. As long as we have a tiered system of payment (and coding/billing that’s both custom AND proprietary to AMA) data interoperability will be excrutiatingly painful – and expensive. Biden scored an easy verbal win – but it won’t change the software.
Footnote: Epic actually has better metrics (that they’ve shared openly with Congress) around data interoperability than any other EHR vendor I’ve seen. Re: Single-pricing healthcare – here’s something I wrote – for July 4 😉 http://hc4.us/PriceNotPayer
Susannah Fox says
Thanks, Dan, for providing that perspective (and even better for health geeks like me, an article to read).
We have veered into the swampy zone of EHR data, but this thread started out (in 2011!) as a broader discussion of how people can contribute their own data to research and discovery, whether they have N=1+ self-experimental data or social network data or A1C values or FitBit data or Blue Button data (admittedly extremely simple and limited text data derived from an EHR). The “green button” that Steve describes is not limited to the EHR context.
Here’s what I want to see: Experiments, on a small-scale at first, even with dummy data or whatever else we need to do to limit liability. But jeepers, let’s figure out how to create an ecosystem, even if it’s for immunization reminders or other low-hanging fruit on the data tree.
Doug Lindsay says
I’ve only gotten this far on this thread, so I apologize if my comment would be different if I’d finished the thread. BUT…
When I want to change something, I start with the piece that makes the most sense to the existing power structure. And I consider at what scale to start. Tech people want to create FitBit Data dumps and Apple this and that’s (and such).
Let’s take another approach, at least in our minds. Hospitals and doctors’ offices already share records all the time. I would use that feature and function to begin something new.
Bob Dole (ret Sen, R-KS) set up a World War II Museum at the University of Kansas. It had a history/oral history function: to gather the stories of the Greatest Generation before they were lost.
What if there were a nonprofit think-tank that people were allowed to donate a copy of their medical records to when they passed away? The nonprofit scrubs all sensitive identifying data from the files and then recodes them, putting back age, sex, weight, location, etc.
There would be a legal document that lets a person in his or her last days before death (or upon death, if that would be legal) order that their records from a list of doctors and hospitals be sent to this nonprofit which has a think-tank function too.
Then you would be aggregating a data set from which researchers could ask questions:
— “What percentage of doctor’s notes contain evaluative messages (subjective, opinion-coloring comments)? Is that the same for men and women patients? Or for male and female doctors?”
— “Is there a vital process that is intended to build understanding or empathy but is used again and again in a perfunctory manner?”
— “Is there a safe-guard, something that was intended to help patients, but in reality functions as a CYA tool or a barrier to good results for patients?”
— “Is there a sentence, or an action that then leads to both poor outcomes, poor quality of life, and exploding costs?” … “Hold my beer!” is slang parlance for the moment before something predictably horrible and avoidable happens. Is there a “Hold my beer!” moment in medicine?
This would be slow and labor intensive compared to gathering digital data from this source or that. But it could be managed by a new, trusted organization, and if/when it starts to find valuable information and insights — insights that lead to change recommendations that help people — it could establish the value to broader types of sharing.
The premise of information altruism seems quite fully expressed in this idea: If we can donate our bodies to science, or donate our organs to save another upon our death, why can’t we donate a copy of our records to an organization that seeks to let researchers study a data set that might reveal insights in every conceivable nook and cranny of medicine?
e-Patient Dave says
Thanks, Doug – I don’t think we’ve crossed paths before. Are you the DougLindsay.net, as in “”I got sick at 21 and spent the next 11 years confined to a hospital bed in my living room… until I developed the surgery that fixed me”? THAT sounds like a heck of an e-patient story!! I have some Thanksgiving video to watch.
> When I want to change something, I start with the piece
> that makes the most sense to the existing power structure
I’d be curious to learn more about what kinds of things you’ve worked on changing.
In the current context, though, what are you proposing to change? I could guess, but I don’t want to skew things toward my preconceptions.
Doug Lindsay says
You are on my list of folks to reach out to! Yes, I spent 11 years bed bound and then developed the surgery that fixed me.
Steven Downs at the start of this thread suggested:
“… under the right conditions, people will choose the path of information altruism. So then part of the challenge is to make that choice not theoretical. but highly practical — or easy. … having a infrastructure that can receive such “donations” of data…”
My thought related to these ideas:
If as Dan noted, “The EHR systems we (still) have were purpose-built as billing engines.”
And hospital brass say things like “Download makes little sense since at the moment there is nothing a patient can do with a download. … Transmit makes even less sense since there is no place to transmit the data to.”
And tech companies like to keep their mountains of data…
Then we find ourselves with sources of data that aren’t ideal for learning from (because they’re designed for billing), or sources that aren’t able to be dowloaded or transmitted (per the statement from John Halamka), or sources of data that tech companies wish to horde…
Then it may be easiest to start a nonprofit that could accept a download of (or a copy of, since that technology already exists) your complete medical record.
Doctors offices and hospitals already send records back and forth every day, so it does not require some new technology to achieve.
And they come in a manner that is intelligible to MDs and office staff.
And they would be sent to this nonprofit — solving the “what can a patient do with a download?” and the “there is nowhere to transmit it to” objections.
Further, if people were to do this near the end of life, the the record they send might be nearly compete, in that it would list all interventions and all outcomes.
This would allow for the development of “data altruism” and allow for researchers to establish the value of “data altruism.”
Then, once people can clearly argue that something is an observable “societal good,” it gets easier to push on the next domino… by saying “If we can do this with people willing us their medical records upon death, imagine what we could do with other sources of data, like those aggregated by the devices worn and owned by patients. Why can’t those too be sent by the very people — the very patients — who generated the data? And if it were sent while they were still alive, the breakthroughs that happen could benefit the patients who made the data donations.”
That is my thought.
Dan Munro says
… and I do recognize that this is a dated thread, but that’s also reflective of the lack of commercially viable solutions (at scale) over a long period of time.
I also disagree with 2 key points. Calling EHR’s “swampy” is dismissive and technically wrong in that it’s very similar to labeling our healthcare system “broken.” It’s not. Both EHR’s and US healthcare are working exactly as designed. We desperately need a different design. Don Berwick uses a great analogy for this with a car engine that gets 2 MPG. We can pump up the tires and change the air filter (and that will increase fuel efficiency), but if we’re looking for systemic improvements at scale we are compelled to look at a different engine design.
The second point is that blue buttons, red buttons, green buttons – are all great “experiments,” but they’re also fatally handicapped because the premise is always the same. That premise is that we don’t know what works – when we absolutely do. The idea of experimenting is that if we keep hacking at the software/API’s/UX, we can “discover” or “invent” a technical way out of a system that’s been optimized for revenue and profits – not safety or quality (let alone equality). FHIR is a *great* example and a great technical innovation, but as the founder himself told me – it’s totally gated by competing commercial interests. Nowhere is that more fundamental or evident than a Master Patient Index (which FHIR does not provide).
Experiments cannot get competing commercial interests to agree any more than Apple will allow iTunes to work on an Android device. You can “import” music from iTunes into Google Play, but even that (by design) isn’t flawless. There’s lots of “data” that (conveniently) gets lost in that translation. Apple does not want that to be remotely seamless – so it never will be. (Footnote: this issue also plays in healthcare with Apple’s ResearchKit and HealthKit. The idea that these are “open frameworks” is laughable because the code itself is proprietary. Simply publishing the design of apps isn’t helpful – especially when those apps are purpose-built on proprietary hardware).
Perhaps more importantly, we shouldn’t expect competing commercial interests to agree simply BECAUSE it’s healthcare. If Pharma teaches us anything, it’s that “shame” isn’t a good motivator for systemic change – at scale.
Apologies for the length, but as a (former) software engineer, I’m equally passionate about articulating the very hard realities of commercial software design and manufacture. Software engineering is a formal discipline with great rigor and labor – but those who manufacture it shouldn’t bear the brunt of our anger at systemic flaws created by others as a way to avoid real solutions at scale.
e-Patient Dave says
For starters, I’m hanging a Medium-style heart-highlight on Susannah’s “let’s figure out how to create an ecosystem.”
Dan, your memory of my Google Health mess is a mixture of various facts, put together in wrong orders and/or places. My hospital chose to send nothing BUT my billing data, thinking it was a valid proxy for reality; the other thing they did that still fries my brain is that they released it for public use (“declared victory,” as they say) without ever testing it on real patient data. (No wonder they got it done before anyone else did!)
It’s relevant that my entire motivation (back in 2009) was to encourage mash-ups! This is from my post on Feb 22, 2009 saying I’d decided to put my data in Google & Healthvault: (All, read that whole post if you dare…)
So why have I [decided to give Google Health my data, even though I don’t trust them]?
First, in the past year an increasingly wide range of people I trust have said “The data you’re concerned about is already not as secure as you think.” [Interesting to see how THAT one has played out since then…]
That doesn’t leave me any more comfortable but I’ve come to accept that my choice of action won’t make much difference.
Second, and more importantly, I’m concluding that we can do more good by aggregating our data into large, anonymized databanks that smart software can analyze to look for patterns. Early detection means early intervention means fewer crises.
Diabetics [who I now call PWDs, people w diabetes] are already starting to do things like this. And the Cambridge MA-based PatientsLikeMe is a full-blown example of a community (ALS / Lou Gehrig’s disease) where patients are tired of waiting for the medical industry to produce results.
They’re uploading their data (anonymized), sharing it, looking for patterns, even creating their own clinical trials.
[Note, this was six years before PWDs started the #WeAreNotWaiting hashtag and the #NightScout data project, not to mention what they’ve now accomplished with #OpenAPS.] [Apologies to readers who don’t know all these terms and activities – googling will reveal what’s going on.]
The third aspect, ultimately the deciding one, is something I see all the time in my day job, where we study new software tools: the power of “mash-ups.” That’s the ability to slap together two pieces of software (or data) that were created without knowing that the other one exists, and making something new out of them without anyone planning it in advance. Things can just grow in any direction people want.
Mash-ups are a big part of what makes the Web what it is today: Anyone can put a Yahoo Map on their web site, I can take someone’s YouTube video and put it on my blog, etc.
So, that was my thinking nearly nine years ago, i.e. nearly a decade ago. In 2017 it all sounds quaint and primitive, but it was new-ish in Feb 2009 … and it’s still mostly non-existent in health data! See what I mean?
2009. The iPhone had been introduced 20 months earlier; the first Android phone was 4 months old. The first iPad didn’t arrive until April 2010, met at first with hoots of “Who’s gonna buy a computer with no keyboard??”
And this industry still isn’t encouraging data sharing. No excuse for that, except as a power grab (or laziness in the form of “you can’t make me.”)
One more thing about apps & mash-ups in the healthcare world:
Learned healthcare people commonly say “The vast majority of health apps are barely used after they’re downloaded,” not noticing that it’s not specific to healthcare: the same applies to MOST app downloads. In short, most learned people in healthcare don’t know squat about the real world of data and tools where real people live.
No wonder they say things like “What would you DO with the data if you had it?” And Biden’s right: it’s none of their business what we’ll do.
Dan Munro says
My reply was loosely designed to answer Susannah’s question:
“I don’t know what game is going on here either. Is it lack of imagination? Is it paternalism? Something else?”
I’m not sure I succeeded, but the “something else” isn’t all that mysterious because it’s the same game that’s been going on for decades and it’s reflected back to us in so many different ways. Patient data — our data — is just one lens into the quarterly march of “shareholder value.”
I absolutely do hope we can create a functional health data ecosystem — but without mandated technical standards (including patient identification and industrial strength privacy), I’m concerned that solutions will continue to be fragmented, temporary, one-off experiments that can’t scale.
Footnote: Personally, I’m also not that confident in “anonymized” data. It’s a word designed to give technical assurances where there’s ample and compelling evidence that (especially now) it doesn’t exist.
“At the time GIC released the data, William Weld, then Governor of Massachusetts, assured the public that GIC had protected patient privacy by deleting identifiers. In response, then-graduate student Sweeney started hunting for the Governor’s hospital records in the GIC data. She knew that Governor Weld resided in Cambridge, Massachusetts, a city of 54,000 residents and seven ZIP codes. For twenty dollars, she purchased the complete voter rolls from the city of Cambridge, a database containing, among other things, the name, address, ZIP code, birth date, and sex of every voter. By combining this data with the GIC records, Sweeney found Governor Weld with ease. Only six people in Cambridge shared his birth date, only three of them men, and of them, only he lived in his ZIP code. In a theatrical flourish, Dr. Sweeney sent the Governor’s health records (which included diagnoses and prescriptions) to his office.”
e-Patient Dave says
The Bill Weld story is perfect and relevant, Dan. As I said back in that 2009 post, people had convinced me that any hope of complete lockdown control was an illusion.
Interestingly, the academics etc who talk about anonymized data seem to not know what they’re talking about! And here we are, out here, not in academia, knowing the street reality.
It’s another lesson that academia’s good, as is the scientific literature, but nothing (including those) should be taken as certain.
Dan Reus says
I appreciate that we’re commenting on something from 6 years ago, but the problem lies between the concept of Peer-to-Peer healthcare and Steve’s original comment which included the language “a fantastic opportunity to harvest individually generated data for insights and new knowledge”.
As a patient, as long as I’m supposed to generate data for providers and payors to harvest, this is a non-starter. Peer-to-peer is about equality in rights, not one-sided exchanges.
Steve might have moved on from this naive wishful thinking that patients would risk their privacy and autonomy for the benefits of other players who aren’t willing to take the same risks, but anyone thinking that P2P can involve others helping you without you reciprocating in a meaningful way doesn’t understand the trust that network effects depends on.
Transparency, visibility and trust are two way streets.
e-Patient Dave says
Dan, FWIW, I don’t at all see Steve’s thoughts back then as naive nor wishful thinking. Reviewing this thread (and the original posts that Susannah linked to), in context his assertion is correct that under the right circumstances patients WILL share their data.
Re naive, and security – as I said in a comment, way back in 2008 people were telling me that our data was not actually secure. The enormous amount of leaked data since then, particularly ransomed hospital data, has proven those advisors right.
But what some have missed is that some of us don’t WANT a well-meaning paternal advisor to say “Therefore you shouldn’t want to share your data.” That’s what I said in 2009 (per my comments above) when I said I wanted to seed innovation.
Then, earlier this year, I blogged “I’m a health data nudist.” (I’m tickled to see that Google says I’m the only one who’s ever posted that sentence!) “I don’t care who sees my ‘privates,’ if doing so furthers the cause.”
I think the time has come for every well-meaning paternal advisor to go talk a long walk or a long nap while we patients – the people for whom the industry exists – see what we can work out on our own. If the world catches fire without those advisors (more than it already has WITH them), they can come back and clean up. 🙂
Shane B says
For healthcare to function at its best we need to share info with clients. For software to function well with multi level of user input rights, access level rights (patient access) and inter-clinic sharing we need complex software that would be prohibitive for Practitioners to learn in depth as input users. I believe we need a new Technologist role that listens into appointments and manages the charting data as software operators. Practitioners focus on their practice discipline then sign off electronically at the end of the appointment what the technologist entered in the system before central database uploading.
So much could be done with patient data via intricate software. For patients with complex or multiple health challenges automated progress tracking could be developed.. the right portal gives patients control for sharing data with disability insurance companies.
Practitioners need to be okay with work task sharing. It doesn’t mean they no longer control what is in a chart, it means they share the workload and become coordinators with charting data rather than doing the actual data input.
Engineers don’t learn complex design software that inputs all the project design data into the database systems for complex industrial projects. Engineers rely on design technologists who learn the complex design software, the database library management, library development. Technologists create links with items in the library to important technical data and based on engineering direction create the clients project. Past project data properly entered in the system is searchable for quick research, stats and sharing with clients as historical expertise for solutions with their current projects. In health, informative videos on condition management or upcoming diagnostics can be linked to symptoms and diagnosis to empower patients and practitioners at the same time.
So much is possible. The way PDS design software from years past operates and how we build add on tools to extract data from the model libraries makes future work more efficient as we pull from past projects and current project reporting data. Easily accessing data and sharing is the future for clients. Controlling the data and not giving the client any data restricts and prevents possible “ah ha” moments. By not controlling and restricting data access it means we make it easy for clients with complex projects (health issues) to find solutions, or understand sollutions options when info is available. We hold clients hostage to data when we control what they know over providing an open source atmosphere with the data.
We need to share health data with patients, practitioners need to transition to loosening control of data with appropriate data management software and multi level user access rights?
Susannah Fox says
Thanks, everyone, for the insights and questions shared here.
In some other work I’m doing, I was introduced to this data-donation project, sponsored by Qntfy, a research organization:
Part of the pitch:
“Giving researchers access to your social media, fitness tracker, or wearable sensor data could change the scope of human knowledge about mental health.”
And a window into one of their challenges:
People who use Garmin fitness trackers can’t donate their data.
“Garmin charges $5000.00 for the API access that would allow Qntfy to collect that data.”
Dan Munro says
I absolutely respect everyone’s right to participate as citizen scientists with their own data, but then I also hope that people (like myself) who elect NOT to participate are afforded equal respect.
I am deeply concerned that the laws protecting consumers health data have not kept pace with fraudulent – and sometimes perfectly legal – means of exploiting their data under the blanket guise of “helping science.” The exploitation is largely for commercial gain – but not exclusively. Sometimes our health data is used for an opaque economic advantage that has very limited consumer protection. A good case in point is genetic information and it’s very limited protection under GINA. http://hc4.us/ReCode1
Until there is more legal protection for our health data, I’m inclined to advise against sharing it unless there is a very specific intent with very tangible goals/objectives.
e-Patient Dave says
Garmin, take note – you’re being a dinosaur here. I know you probably have support costs (my career before healthcare was in tech, so I know about support costs), but today we live in an open world, and the new reality is that ya gotta suck it up: those costs are an expected cost of doing business, the price of entry into the bigger game.
In my view this is exactly the same kind of change as the current reality about usability: it’s the price of entry, not something you can charge extra for.
I used to be a Garmin user, and for various reasons I’m now using FitBit. If you put a hurdle in front of the data you harvest from MY BODY, it guarantees I’ll never do business with you again. But I like to have choices, so I hope you’ll change.