Epatients: The hackers of the healthcare world

A quick reference for becoming an empowered patient.

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I help build open source software tools that patients can use to have greater control and influence over their own healthcare (like the Direct Project and Your Doctors Advice). As as result, I’ve become quite familiar with other tools that do the same sorts of things. There is a community of patients who are deeply interested in the ways in which they can become more engaged and how they can specifically use technology to achieve this. This community calls themselves epatients. The epatient community asked me to write a short collection of resources for “becoming an epatient.”

The “e” in epatient is intentionally obscure. The initial assumption is that the “e” stands for “electronic,” as it does in “email.” But in fact, the “e” stands for “engaged” or “empowered.” Nonetheless, reference to email is intentional: The epatient community recognizes that leveraging data is a critical part of empowering a person who happens to be sick. Patients must be “electronic” to become fully “engaged.” I think of epatients as the healthcare equivalent of makers and hackers. More importantly, they are the people I have in mind when I write software.

Engaged patients get better healthcare. Not just a little bit better. Much better. This is not a thesis I am prepared to defend here, except to drop a link to the Journal of Participatory Medicine, which is a good resource for those seeking a full chronicle of this engaged effect (the benefits of engagement have been documented in the healthcare literature for years).

Let’s go over some simple concepts that the rest of my epatient advice and resources are based on:

  • Your doctors are probably not managing your healthcare information. You should assume it is your responsibility. Otherwise, the people involved in your treatment process will often presume that this information simply does not exist.
  • Other patients, with similar conditions to yours, can have better information about your health problem than your doctors have.
  • Like the highway system, the healthcare system is generally beneficial, but there are dangers, and you need to learn to avoid them.

And here are two things you should keep in mind:

  • Whenever I say “patient,” I actually mean “the patient/caregiver team.” Often, the patient will not have the energy to do what is necessary to be fully engaged. It is critical that when the patient cannot be an epatient, that at least the patient’s team be an epatient proxy.
  • In regard to the “better information” I mentioned above, I don’t mean that your doctor is typically wrong and another patient is typically right about your diagnosis or treatment options. While that does happen on occasion, it is not the norm. Another patient’s information is “better” because your doctor typically does not have the visceral experience of being a patient. Your doctor doesn’t understand which lotion can make all of the difference or what position might let you get some sleep after a rough procedure. There is simply no substitute for experience. Sometimes that experience can make your life a little easier, and sometimes it can help you get the right treatments that literally will save your life. (This is the gist of epatient Dave deBronkart’s story.)

The first thing an epatient needs to do is find the right epatient community. For any common illness or group of symptoms, there is a community of people who are already connecting with each other over the Internet. For people with a recent cancer diagnosis ACOR is probably the right place to start. This is one of the oldest, largest and most active epatient communities. Sometimes, the tools that a particular community of epatients choose might be a little old school — things like traditional forums, or even list-serves. Do not judge a community by its adoption of technology, judge it by its activity level.

There are efforts to create technology solutions that are specifically designed to enable patient communities. For a good example, check out PatientsLikeMe, which is representative of patient communities drifting more toward “patient social media.” I am happy to say that epatient tool makers like me are coming up with cool stuff constantly. But the mature epatient is not impressed by new and shiny. Remember, it is the relationships and insights that matter here, not the technology. Whenever possible, you want the right information delivered over the wrong technology medium, rather than the other way around.

For any serious common healthcare condition, there are probably several different communities of patients online that you can meet with. For common conditions, you might also be able to find a specific meetup in your area, or at least some kind of epatient meetup. If you have a rare disease, you might have trouble finding local resources, and you might only have one or two online communities to choose from. But for rare diseases, the online patient community as a whole is typically better informed than the average primary care physician on a particular condition. Sometimes a physician might not understand or recommend treatment options that are offered outside their local healthcare community, an issue that can be compounded when they are unfamiliar with a particular type of diagnosis. It is even more critical for rare disease patients or caregivers to find a patient community and listen to them. For rare diseases and conditions, it is critical to understand what treatment options are offered in other areas and to be fully informed regarding sham clinics that often operate in under-regulated areas.

How do you know you’ve found the right community? Here’s a good rule of thumb: If you can’t get a real response to a simple health question from the community within 24 hours, you should probably move on if there are other options. Healthy epatient communities are vibrant and alive.

You should also consider joining the Society for Participatory Medicine (SPM). The mailing list for the SPM is one of the most important cross-condition meeting places for epatients.

If you are interested in the technology side, also pay attention to Health 2.0 (#health20), which has a Patients 2.0 (#patients20) community that is concerned with the “electronic” part of epatient. Generally, I find that Health 2.0 is the right place to find out-of-the-box thinking on healthcare information systems, especially those offered directly to consumers. I go there to get the down-low on my competitors and to find collaborators. Matthew Holt from Health 2.0 cross pollinates the healthcare blog, which is also worth adding to your RSS reader.

The cross-disease epatient community uses Twitter more than Facebook or Google+ (for the time being), and the #epatient hashtag is your friend. I also recommend following @epatientdave, @reginaholliday, and @hhask as good starter accounts. If you care about the tech aspects of epatients, then check out @NateOsit or myself (@fredtrotter). And if you’re interested in the activist portion of the epatient community, then look at the Occupy Healthcare roster.

Once your healthcare information gets past a certain basic level of complexity, it becomes important that you have a personal health record (PHR). Your doctors should, eventually, be able to update your PHR. That means you need a PHR that supports the Direct Project. Right now, that is a short list, with Microsoft’s HealthVault at the top. As a FOSS advocate, that is not an endorsement I make lightly, but Microsoft’s health IT team has been surprisingly supportive of open source (i.e. patient empowering) technologies and they have relatively mature Direct support. Indivo is pretty much the only one to consider if you want to run your own PHR (it’s open source), but its Direct support is lagging. Something you should keep in mind: If you have only one doctor at a time, you do not need to obsess about the coordination of your own healthcare information; if you have more than one doctor, you do. You can manage this information with a PHR, or a notebook, or even an infographic. What matters is that you need to do it, and do it carefully.

Some of the people in the Quantified Self movement are patients who are trying to use data about themselves to improve their health. If that interests you (if you have a chronic condition, it should), then take a look at the Quantified Self website.

There are two types of patients: those who are in crisis mode and those who are in maintenance mode. If you are in crisis mode, and you feel like your whole world has been turned upside down, then I recommend you read Dr. Carolyn Oliver’s book “Cautious Care: A Guide for patients.” The newest edition of this book is also available as a series of free PDF downloads from the Cautious Patient Foundation website. Here are direct links to the hospital part and the outpatient part. Dr. Oliver’s book is like a “defensive driving crash course” for the healthcare system. If you are going to be staying up all night at the hospital (as a caregiver or a patient), and you have no idea what you should be paying attention to, this is the book that you should be reading. (Disclosure: I work for Dr. Oliver at the Cautious Patient Foundation.)

If you are in maintenance mode, you should still start with Dr. Oliver’s books, but you can also extend your reading to the classics of the epatient movement. That process should always begin with the e-patient white paper, and I also recommend the book “Laugh, Sing, and Eat Like a Pig” for ethos purposes. Go to e-patients.net and click “categories” to find the content on that blog that seems relevant to you.

If you are well, consider spending some time with these resources. When you become sick you do not want to be learning how this stuff works. You will probably ignore this advice, and that’s fine. Just try to remember that this advice is here when you need it. Also, remember that these are not instructions for how to handle your illness; they’re instructions for finding the instructions on how to handle your illness.

If you are newly sick, then what I have written here will sound overwhelming. You are tired, scared and confused (and you don’t need some arrogant geek telling you that you need to use technology to look over your doctor’s shoulder). Recognize that you will not have the capacity to bring your intellect to bear on this the way you could when you were healthy. It is very tempting to just check out and trust that the healthcare system is going to take good care of you. But please trust me on this: That’s a bad idea. The default settings on the healthcare system really suck. Your doctors will provide you with options, but they do not have the right perspective to help you make the right choices. Patients often ask their doctors, “What would you do if you were me?” The very, very best doctors reply, “But I am not you.” What you need to find are other people who share your values, who are living with the consequences of having made the choices that you are facing. I say this with both a deep sense of pride and a great deal of humility: My spiritual predecessors (health geeks) have made sure that the Internet can provide you with connections to these people.

The Internet will make it easier to connect, which is awesome. If you cannot summon the strength to do this, fine — entrust someone you love with the task of connecting for you. I truly believe that it is impossible to be an epatient alone. Moreover, I believe that it is impossible not to be an epatient if you have shared your burden with even one other patient.

For those who need encouragement with their ongoing efforts to connect to others with the same suffering, I leave you with some video happiness. Be sure to watch the whole thing:

Meaningful Use and Beyond: A Guide for IT Staff in Health Care — Meaningful Use underlies a major federal incentives program for medical offices and hospitals that pays doctors and clinicians to move to electronic health records (EHR). This book is a rosetta stone for the IT implementer who wants to help organizations harness EHR systems.

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  • http://www.pewinternet.org Susannah Fox

    Fred, thank you. There are so many great lines in this post, but I think my favorite is:

    “…remember that these are not instructions for how to handle your illness; they’re instructions for finding the instructions on how to handle your illness.”

    Because of the work I do (researching the internet’s impact on health & health care) my extended family members often turn to me when someone they know receives a life-changing diagnosis. It’s a new form of tech support: I don’t fix their computer, I connect them with peer-to-peer health care resources. I will add this to my toolbox.

    However, this guide would be daunting for many people in my network. They don’t use Twitter, they aren’t aware that they read blogs (even if they do), etc. For them, I turn to Eve Harris’s lovely “Open Letter to My Friend Who Was Recently Diagnosed with Cancer”

    See:
    http://eve-harris.blogspot.com/2011/11/how-to-help-friend-with-breast-cancer.html

    Again, thanks so much on behalf of all the health geeks out there, providing tech support. May we be less in demand in the coming years as people learn how to navigate this on their own (and may the health care system adapt to better meet people where they are).

  • TexasBones

    The kewl thing is that you can become an epatient at any point in the process.. It is my understanding that Dave didn’t become an epatient until after he was diagnosed and had a treatment team in place and he got his care from a hospital that already had an EMR in place.

    I have heard his doctor speak and I might be wrong but I think it was Dr. Danny Sands who actually sent Dave to the online community at ACOR that supported the plan the doctors had already come up with?

    I think the way Dave became somewhat famous is actually because he didn’t understand that it was his billing code information that was sent to Google Health (vs clinical data) Unfortunately, according to colleagues at Google Health his Boston Globe front page confusion almost single handidly set back the PHR movement (I think they just had a lousy interface and his “records” should have been cleaner).

    There is no question that data is empowering but I wonder if we run the risk of raising expectations (a health data bubble) when we read a headline like – Facebook saved my child’s life and only later do you realize that her friends and family included pediatric cardiologists or that when Dave’s story is changed to one where online community can “get you the right treatments to save your life”.

  • http://@msaxolotl Alex

    Great post Fred. It brings together the disparate pieces in the e-health community!

  • Alex Stobart

    Hello Fred

    Thanks for writing this very helpful summary.

    In years past, I used PLM even though I live in Scotland, UK

    There is a company now in Cambridge, England called Patients Know Best that is working with our National Health Service (NHS)

    http://www.patientsknowbest.com/

    Regards

    Alex

  • http://chuckhartmanhistoryconductor.blogspot.com/ Chuck Hartman

    http://godparentsforeldsters.blogspot.com/

    Older people (honored with the word ‘eldsters) will need help, just as infants may lose parents. As churches facilitate ‘godparents’ or ‘sponsors’ for infants, so too should they do for eldsters.

    Here’s a ceremony.

    Chuck
    PS: When churches say that ‘the whole church’ is responsible, too often this means that now one is responsible.

  • Healthcare IT solutions

    Those are some really nice and beneficial tips for patients.The best thing you mentioned is to have an EHR or PHR. I would like to add that Electronic record should be preferred as its more safe and easy to overview.

  • Edu Oliveira

    A brilliant initiative, great post!

  • e-Patient Dave

    Hey, TexasBones! Lotsa interesting stuff to discuss in your comment – mostly on target, some not – would love to discuss. What’s your name, what’s your role? (Doc, patient, policy, IT?)

  • ABDefChick

    As a rare disease patient, I have long been a healthcare hacker. For patients like me, peer patients may be hard to find, but well worth the search. Technology is less important than the scoop others can provide. A researcher who could tap into an active epatient community would learn much.

  • Tommy Brix

    Thank you for very good information. I think an information system for self healthcare is great.

  • Antonia D'Onofrio

    Good compendium of sage guidance for navigating the process of illness and recovery. My experience with doctors and my treatment team for Hodgkins Lymphoma has been only good. There is one place where the quicksand is thick enough to suck a newly sick person into believing that health management “knows” “really knows” what it is doing, only to find out that health management sometimes knows disgracefully little. I speak of the “case manager service” offered by many of the insurance companies. I had to educate a nurse practitioner assigned to my case of the basics of my illness and the standard treatments. I had no sense whatsoever that she read any of the case information gathered about me, or that she had even a fundamental grasp of the extent of the debilitating aspects of Hodgkin’s and the impact of aggressive chemotherapy as prescribed. I was shocked by the mistaken advice that she shouted at me, and truly put out by the amount of telephone tag that we played for me to receive woefully wrong information. This is an area that needs to be vetted and evaluated. Thanks for the opportunity to speak out.

    Antonia D’Onofrio

  • http://caroleschatter.blogspot.co.nz/ Carole

    Interesting post. The best book I have read in years, on health or anything, is Better. I was lucky enough to have a neigbor lend it to me otherwise I wouldn’t have heard of it. http://caroleschatter.blogspot.co.nz/2011/11/better-by-atul-gawande.html