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Open a Big DaM Spigot – Data About Me!

We demand a medical record spigotIn health care, information enables better work. It’s very simple. Nobody can perform to the top of their potential if they don’t have information; to constrain the flow of information is to constrain what’s possible in healthcare. Yet time after time, we hear how difficult – sometimes impossible – it is for patients and families to access, use, or share their health information from one care provider to another. We must make it easier, and it is up to us to demand change.

To start, every one of us (and our friends and neighbors) needs to demand our health records.

In fact what we should ask for is not just CDs or printouts now and then – we should demand a medical record spigot that sends us a continuous flow of information, just like banks and credit cards do. You don’t have to read everything they send; you just need to have it, so you can review it when you need to, and so you can do with it what you want.

Why should it be hard work to get your sick mother’s records?? Your sick child’s?? Your own?  Every individual has a right to health, and that includes a right to what my musician friend Ross Martin M.D. calls “their DaM data” – their “Data About Me.”


In my TED Talk I asked “Why is it that iPhones and iPads advance far faster than the health tools available to you to help take care of your family??” The answer is that iPads have tons of data to play with, and in healthcare that data’s locked up

Apps like Quicken get all your data from banks and credit cards and bring it together – because banks have spigots. Quicken connects and gets what it needs, so you can get the big picture. If there’s a mistake you can spot it as soon as you check. We need this in healthcare.

It will be harder in healthcare because medicine’s complicated. But you know Silicon Valley – they’d be happy to invent new software to sell us, but they can’t because the data’s locked up. Demand a spigot!

The spigot problem cuts both ways. Now I have data that my care providers can’t see: my home blood pressure machine and bathroom scale put my data in the cloud and on my phone. I was showing it to my doctor during an appointment and I realized, Holy crap, his big computer can’t see this!

What you can do

  1. If your care providers have a “patient portal,” sign up now. Don’t wait. This one’s quick and easy: just ask. Signing up online takes only five minutes and it’s free. Do it: we need to stop them from saying “Patients don’t even take it when it’s free!” If they haven’t offered it to you, call ’em up and ask!
  2. Until you have a spigot, carry your own water: ask every clinician and hospital for copies of your data. It may take time, so start now. Often you can get it for free, or they may want to charge you; many people say that if they push, the charge may be waived. (Get it on CD, if you can, not paper!)
  3. Tell them you want a spigot – a DaM medical record spigot. Tell your care providers “I really want to start getting involved in managing my records. Please get software that will let me do this.” They can’t buy that software yet, but all change starts with people asking.
  4. Got a story to share?
    Here’s how!
    Without stories, issues don’t have human impact. Have you tried to get your records and been stonewalled? Was it cryptic, or wrong? Was it great and easy? Tell us! Share your story here.
This Post Has 7 Comments
  1. I like the analogy “Until you have a spigot, carry your own water”. Applies to consumer-mediated exchange as well.

  2. Good post…count me as a partner in this critical fight until it’s solved (which is will be).

    I’ve been helping patients gain access to their records for almost 5 years. We started with a B2C approach (Qpid.me) and tried to activate consumers/patients to request their HIV and STD records to start with. Very specific use case where anxiety about test results is high. Tens of thousands of requests were sent to healthcare orgs around the country. Only about 50% sent back records in a timely manner, and that’s after my team spent time on the phone fighting for the rights of patients.

    We switched to a B2B model (name change to Healthvana) and started working with large healthcare providers in the sexual health space and now are helping hundreds of thousands of patients access their test results in real time. The healthcare providers (our customers) understand this is a big competitive advantage and more patients are going to their clinics.

    And guess what…80% of patients are accessing their test results in less than a day. People do want their records. Of course they do. But we have to make it a well designed and easy to use “spigot.”

    1. Love the song! Thank you for those two to great and energetic posts!

      We are taking a crack at those Spigots except we are calling them “Synchronised Heath Records”.

      Our founder started this project after being a medical software developper (secure messaging between hospitals), then a patient (Leukaemia), and then a care giver (10 year old son, bone cancer). His story is here : http://bit.ly/A7Blogvk (they are both well today).

      Today Andaman7 is available for free on iPad (and soon iPhone). It’s an offline tool allowing any user to create health records, share (parts of) them with relevant people and have that circle of trust access and add on to those records from anywhere.

      Because everyone should have access to their own data and because professionals should have the whole information when giving a diagnosis, we decided to build a “Peer to Peer” solution and enable people to sync their data and work together.

      We do hope to be of help for initiatives just like yours!

      We are starting out so don’t be shy, if you find things to improve/replace/throw/add/change, let us know! Our goal is to build an efficient tool that works for the greater number.

      http://www.andaman7.com

  3. This is a really great post, Dave! I have been following you for some time now (TED & al) and I really do appreciate your work! We are working in the same direction… Shall we collaborate somehow? I’m on this side of the pond (Belgium, Europe), and together, we can cover a large part of the world already. We’ll need to find more people from other parts of the world, but it’s a start.

    For the past 3 years, we have built Andaman7 exactly for the purpose you are mentioning. As Maite said, we have a version 1 ready and free on the AppStore (iPad only: iPhone and Android versions are coming)… This is a social project with a startup spirit to finance the whole operation for the benefit of all – patients and healthcare providers.

    Let’s disrupt the world of healthcare!

    PS: If you have the opportunity to test Andaman7, let me know what you think should be adapted (eg. for the U.S. Market)…

    Good luck!

    1. Hi Vincent, from one Belgian to another! (Well, at least my ancestor…)

      You must not agree with the government’s “Don’t Google it” Google Adwords campaign! 🙂 Did it get much publicity there? Very anti-patient-power, eh?

      I’m on a partial holiday this month – please get in touch via the Contact page on epatientdave.com.

  4. Spent last forty seven years as caregiver for wife with multiple med issues. During this time as a Pastor have moved multiple time through out mid west. As there were multiple hospitalization and multiple clinics it has been me and computer or I pad that have kept records uniformly available dure to papritory constraints on wife’s med record. Presently us three hospitals three clinics, four pharmacy distributions, and close to twelve med specialists. With out my records and the limited electronic portals that only I can access (especially important in multiple emergency room situations) many issues would have and have been missed or lost in the emergency moment.
    I have for a long time longed for a central spigot that is patient or care/giver friendly.

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