Three years ago this month, at the Medicine 2.0 Congress in Toronto (photo at right), I gave my first keynote: “Gimme My Damn Data.” As I detailed recently, it was the beginning of a movement. And now, this weekend at the same event (at Harvard Medical School), I’ve been invited to give the closing keynote:
“Gimme My Damn Data, Three Years On: What’s Changed, What Hasn’t, and What Still Needs To.”
I have my own thoughts, but I’m sure you do too. What do you think? One big thing that’s changed is that this is a movement with many voices – I’d love to include yours. Leave a suggestion in a comment here, and if I use it, I’ll credit you!
For starters on What’s Changed:
- ARRA / HITECH: The US stimulus bill, with its billions for adoption of health IT, has rolled out and is causing change.
- Meaningful Use: in the US, we now have regulations that are tugging
- The OpenNotes project has completed; its results will be announced next month. (A massive study to document what does and doesn’t happen if patients get access to their doctors’ actual visit notes.)
Starter on What Hasn’t and What Still Needs To:
- It’s not a reality yet. Many providers still resist.
- You and I don’t legally own our data. If we did, they couldn’t keep it from us.
- Most of us don’t have good patient portals
- It’s practically impossible to pull together data from all sources into a single record.
What else?? I know there are tons more – help me!
Here’s some background information, for those who aren’t familiar with the story.
The subtitle after “Gimme My Damn Data” – which I spoke, but which wasn’t printed in the program – was “…because you guys can’t be trusted with it.” I said that because when I tried to move my medical record to Google Health that March, for some crazy reason my hospital sent my insurance history instead of my actual clinical data. As it happens, my insurance record included all kinds of crazy things: volvulus of the intestine (a lethal condition I never had), a cardiac diagnosis (false) when I was having an infusion of a bone medication, a “bone and cartilage disease” diagnosis when I was having a lump in my tongue looked at.
Fortunately, I’m told, the resulting uproar led to the decision in DC not to use our insurance histories as a basis for our new EMR data! (I’m told that until this all came to light in a Boston Globe story about my data, some people in DC were saying that our insurance data was a good snapshot of our medical history. Not smart: one legitimate billing code in my case was “metastases in the brain or spine,” which I was checked for … it came back “not found” so the billing code was accurate but that’s not valid info about my health.
The full 2009 keynote is in 4 parts on YouTube – see it on my Videos page.
Dave, your recap above gave me ideas! In Europe, we are in the “Digital Agenda 2020” (http://ec.europa.eu/information_society/digital-agenda/index_en.htm) era, that is a European Union policy about how digital can help governments, organizations and people work more efficiently, communicate better. The deadline for EU member countries to achieve the goals is 2020. Of course, a big part of the policy concerns health and healthcare.
The EMR is a new thing in many European countries, in France they have launched the pertinent application just a few months ago. In Greece, we are behind, for the time being we are struggling with the global e-prescription & e-referral applications. The EMR will wait…
I would like to see in your presentation also the international perspective and not only the American one, but I don’t know if it is possible.
What is important to mention is that the“Gimme My Damn Data” movement starts to reach Europe, maybe not as a requirement for access to the patient’s data per se but as a right to which patients are entitled to and which they did not conceive they had..The fact that American patients claim loudly their right to access their medical file is empowering for patients in other parts of the world… Great work Dave, look forward to your presentation!
In a #hitsm chat today someone mentioned that only 5% of patients are engaged with their doctor’s portals. two reasons:
– bad applications
– doctors are not reimbursed for emailing or virtual visits.
It all ends up with how we pay our primary care doctors: they are overwhelmed, they can’t pay (or have time to select) better/cheaper applications and they are not paid for electronic access. They are pushed to quit the system (see Dr. Rob – a champion of EHR).
@cascadia, Sherry Reynolds gave me the example she keeps mentioning: at Group Health, 60% of patients are engaged and 40% of the visits happen online.
Thank you for finding your voice in the midst of your own health challenge years ago! By speaking up and demanding to be given your “damn data”, you have helped others to find their voices.
A few things come to mind for me, one issue I have heard from physicians regarding patients having access to their own health records is that patient’s will “know too much” about their health/disease that they are not equipped to deal with and that they may make decisions about their health/treatment without the doctor’s input. On one hand there is a movement asking patients to be personally responsible for their health by making healthy choices and lifestyle changes, pay attention to side effects from medications, and report unusual or persistent symptoms to their doctor for care. On the other hand, patients who know too much and take responsibility for their health by communicating with their doctor about what they are experiencing or have learned about by doing their own investigating are criticized behind their backs. I know this because I am a nurse, I hear it. I have also heard, nurses are the worst patients because “we know too much”. This makes me cringe because this statement means knowledge is not appreciated or respected.
I am happy with the movement that has been made in the direction of access to personal health records. My health is MY business and I consider my health care providers as my partners, not my supervisors or my consultants. MY health information is about MY health and/or disease state. Providers protecting me from my information may be less about protecting me and more about protecting the provider.
Finally, if I were to need to hire someone to work for me I would interview them to see if they are a good fit for my organization and workplace. This interview would not be a paid experience for the job applicant. Patients should be allowed to do the same. Patients’ lives and well being are placed in the hands of strangers. After a 10-15 minute introduction and review of symptoms, patients are advised to do something- diagnostic tests, medications, therapies, or self care treatment. Sometimes lifestyle changes are recommended. If a patient does not agree, the patient is labeled non-compliant or difficult, or accused of not wanting to feel better or too often labeled mentally ill. All of this occurs with someone the patient barely knows. Before making the decision about who will help the patient to be well, patients should have the right to know who they are going to be hiring. Interactive websites with CV and video interviews of providers would be a starting point.
Thanks for the opportunity to comment and THANK YOU for the incredible work you are doing. I look forward to learning more and hopefully seeing you speak soon!!
e-Patient Dave says
Joyce, several thoughts.
> patient’s will “know too much” about their health/disease
> that they are not equipped to deal with
This is so paternal it makes me puke. :-) “Keep ’em in the dark because they can’t handle it. How do we know? Because, well, look at how little they know!”
That’s the same rationale that was used in the 1980s to keep us all out of computers, btw. (Rationale used by the people who worked in the computer departments!)
> …and that they may make decisions about their
> health/treatment without the doctor’s input.
It astounds me how many people in the medical “arts” form opinions without evidence. It reminds me of the old “expert based medicine” as opposed to the more modern evidence-based medicine.
On Saturday at the conference Susannah Fox gave a sneak peek of her latest data (about people using the internet for health info, another common complaint) and there just isn’t evidence for it. I wonder if there’s evidence for harm from patients making such decisions – while, meanwhile, there’s much evidence of hundreds of thousands of accidental deaths a year in hospitals.
It’s also perverse, IMO, that it’s so hard in America to get a quick answer from a doctor on a question about what to do, and then patients get criticized for supposedly acting WITHOUT getting physician advice.:-)
ANYway, on Oct. 11 in DC they’ll announce the results of the OpenNotes project, where over 200k patients did get to see their doctors’ records, for a year. I hope they studied how many patients did anything stupid!
e-Patient Dave says
> I would interview them
> Patients should be allowed to do the same.
Heck, LOTS of doctors do that now – that’s not even a leading-edge thing anymore. Have you asked??
If they say now, have you asked your insurance company if they can arrange it?
Mighty Casey says
Thank you, Dave, for being the standard bearer of what has become a movement. Sure, we still feel like peasants in an old movie, storming the castle with torches and pitchforks, but we’re managing to scale the walls!
Joyce’s analogy of “hiring” a healthcare provider is spot on – that’s the approach we all must take is that our health is OURS. Which includes full access to all data pertaining to us, and our care. That the patient community has made as much progress as it has is due to leaders like you, and those of us on the ground in clinics across the nation, and the globe, saying “give me the tools to help you help me – GIMME MY DAMN DATA”.
It’s impossible to “know too much” about ourselves.
e-Patient Dave says
Casey, it feels a little uncomfortable to be referred to as anything other than one voice, but I know the feeling you describe.
> our health is OURS
Yes. Precisely. In my view, clinicians (and care designers – researcher, insurance, employers, everyone) should listen more to what we want, and we need to do our part.
I don’t want to start a motorcycle war :-) but I live in a no-helmet-law state … I know there are people who want to ride without a helmet, but I always wonder about the relative costs of accident victims who did and didn’t have a helmet. Who knows – maybe the ones without helmets cost less because they die more often. I dunno. Anyway, my point is that it’s not just the impact on ourselves, there’s the cost to whoever’s paying our medical bills.
(Which, in your case and mine, is us – the out-of-pocket brigade.)
Adam Zbiejczuk says
thank you for your great keynote in Boston. I prepare an article for a leading Czech news site about internet/ICT about the whole event (plus I want to dig a bit in the Medicine 2.0 topic in general) – and I wonder, do you have these slides from Boston available on-line? I would love to go through it once again so I quote you correctly. And I’m quite sure others would love to see it too.
Mary Fairweather Dexter says
Not only do we need better access to our own data, we need to ensure that it is accurate and that physicians actually look at it.
A few years ago I had a suspicious mammogram that led to 2 biopsies without adequate anesthesia. I looked at my records when I transferred to a different HMO. Among the errors noted: The previous year the dots on the opposite breast had disappeared on their own meaning that both biopsies were probably unnecessary (cancer was never found). The doctor listed as doing the first procedure was not the person who did it. I never did learn who the man was. My scoliosis was never mentioned. And the topper: I supposedly had an 11-year-old son at the time (actually, my only daughter was 15).
Elizabeth Rankin BScN says
I reviewed this article some time ago and am now reviewing it again. I am writing a book and part of the concept, “gimme my damn data” and more is discussed. My slant on this aspect goes further. I propose that patients as a commodity, which they are, have value like any commodity, so let’s monetize the information patient’s provide. For example, every time a patient provides data such as a drawn blood sample for analysis, any diagnostic imaging done, any procedure performed…all data based and reported on, the patient should be the first one that is informed by the “source” and should be added as an interested party to the action. By law, all patients are entitled to their data, at least they are in Canada and have been for over ten years. If, all the providers had to provide us a fee for our data, we might have some say in how we regulate our data and who gets access to it and who can actually use [not abuse] our data and that we get to validate all data prior to any storage and sharing of data.
For example: if lawyers want data and an opinion, they have to pay a doctor. But, why doesn’t the doctor pay the patient to release data they choose to give away? How do we know it is theirs to give especially when we don’t know what they’re saying about us and that which can and often does harm us.?
If, for example, we see a consultant, we need to know the reported data about us is accurate so it doesn’t get continuously funnelled and misaligned in different directions. To say the patient won’t understand the data is in some cases true but that doesn’t mean all the above isn’t applicable and pertinent. It means the patient who doesn’t understand test results and their impact, for example, will have them explained.
It seems those who are able to professionally charge at any point along the continuum in healthcare aren’t questioned, just paid for charging and they are those that get recognition. Patients need to be the regulator of who gets to see what. The problem is that historically we’ve “given our consent” and had to “before treatment of any kind, including seeing a professional, but we as patients need to re-think the boundaries that have been created against us, rather than what we are told is their to protect us.
This is a problem I pose for broader consideration. Is there any value to patient data? Advertising companies think so. Who gives them permission to use our data for journals and research where they benefit and profit both on sales of journals and anything that is developed based on our data, including clinical trials.
Elizabeth Rankin Author: THE PATIENT WILL NOW SEE YOU: How Listening to the Patient will Redefine the PatientDoctor Relationship. Expected publication fall 2014