Earlier this week in one of the leading Dutch Medical Magazines Medisch Contact Dr. Broeren (Anesthesiologist) reflected on an interview with me about Participatory Healthcare that was published in the same magazine two issues before. Headline was a statement by me, during this interview: "we act as if patients can't do anything".(or with Google translation just to get the quintessence). Unfortunately it is not possible to comment on the article it self without a log-inn, and I wanted to give room for further discussion so, I posted my reaction here in my own blog and encourage you to share your thoughts with us below.
In Broeren's reflection titled "a well informed patient is fiction" (or Google translation of Broeren's reflection ) he sets great markers to some of the addressed issues in my interview. By some seen as criticism, by others as true, for me a great encouragement to give my perspective on the effort he's taken to reflect on the interview with me.
I took the liberty to condense some of them in my own words, but ask Dr Broeren to reach out to me if somehow I didn’t do his words justice.
Patients search and find information on the internet but that is basically adverse information. Given the fact that the (patients) also would tend to read easier formulated text than peer-reviewed information on evidence Based Medicine, they can not find the correct information.
Here Broeren has a point, indeed a lot of information on the internet is barely readable nor understandable for many of the patients. But wouldn't that be the challenge to meet for healthcare, to have a uniformed set of information on specific diseases, diagnostics, treatments. Maybe it makes sense to take a joined effort to NOT form this unified information source for healthcare institution by institution, but together nationwide? (or even worldwide?) Also i would like to stretch out that there is a huge group of people that can't even read or write. In the Netherlands alone this counts 1 out of 9, and 2/3 of this are native Dutch. So : yes we there is a challenge we share.
Broeren states that there are indeed "googleing" patients. How true : 84% of the people visit Dr Google BEFORE they enter the consultation room, and a big chunk will do this after as well. Health information is the Number 3 of search content on Google. And yet, many healthcare organizations (including my own, up until recently) THINK their information is findable when they put PDF-leaflets online. Well: it isn't. As healthcare we have a challenge here as well to not only make information findable, readable but also trustable. Some kind of authentication like the HON-code would be a good thing to apply?. We have to figure out the right way to handle not only the society change but also how to cope with Evidence Based Medicine Vs Internet Based Medicine, and how to get those two more together.
They barely know what kind of medication they are on.
Yes again a point there. However is the patient accountable for that, or are we as healthcare to take that as a challenge as well. For instance the reader that come with medication, ever tried to read this ? Do we take the time to explain it in a understandable way? Seen how the effort looks like to be given the wrong side : to make sure NObody actually reads these readers as a whole. Same goes for readability of peer reviewed articles etcetera, sure not intended to and aimed at patients, but keep in mind that once you get sick, the information about it gets a high-interest topic. Have a look on what is happening on sites like www.mijnmedicijn.nl but available in other countries as well, where patients give feedback on the use of medication, or the switch from branded to generic medications.
I do greatly respect the effort Thomas Goetz (editor of Wired) took recently, to "translate" a medication reader into a readable format with the knowledge of a publisher and presented it at friends at TEDMED Best to let him do the talking about it ;-)
Broeren expresses the hope TEDxMaastricht would be the starting-point of a discussion.
Yes and no ! The discussion is already out there, it has been for some years , Not everywhere as intense and not everybody sees it. That's why we i.e. set up our TEDx conference. Nobody (at least I didn't) says that there are hundreds of thousands well informed patients out there. But this is rapidly changing. And Yes; it is a starting-point as well, if only looking to the reflection Broeren wrote and calls for action.
I kindly invite Broeren to our REshape PechaKucha Night (4 edition) we have announced the day after TEDxMaastricht "from idea's worth spreading, to ideas worth doing". 12 speakers will talk about what they have been doing with the ideas from TEDxMaastricht.
Also I would cordially invite Broeren to our next edition of TEDxMaastricht "The future of Health" (second edition) on April 2nd, 2012 to discuss with us how to combine his view with us on how to cope with the challenges we both see heading towards healthcare.
Just to give a little more perspective would like to point out to another interview done by Frank Boermeester of the Fifth Conference in Belgium and an article with his own view on the change that is happening. Perhaps also reading both little booklets on Health 2.0 are worth reading, the first edition is free obtainable in e-book format by paying with a tweet.
I am curiuos to your perspective and comments on this discussion!
PS : during writing this blogpost got a phone-call from my brother in law. Two of his kids have a double allergy for both Eggs and Cow-milk. Because he cannot get acceptable information from his physician, and there is only little known about the combination of the two, he started setting up a website, and wants to make a app to share and to help a little.....
