Google pulls the plug on Google Health, and on participative health too ?

I had hoped Larry Page had made another deciscion on Google health. Right on the very moment that challenges for health(care) are at the most, we need big steps, we need support of global leaders, since Health is global.

A lot of us are working to get healthcare changed into a participatory system. For instance in my own Academic Hospital (Radboud University Medical Centre, the Netherlands) together with my executive board i set up a vision in which we are embracing the patient into the healthcare team. To do so we are REshaping our healthcare system from the way we encounter our patients, to the way we educate our new colleagues and students. 

One of the keypoints for patients to get in position to talk with healthcare-professionals about their own health(care) is to be able to have access to the data about it. With this they have the ability to make shared decisions, are better informed, have more options and understand better what and why is happening and probably stick more to the agreed treatment. 

Sure this was one of the starting points for Google back then when they started. But stop now ? Just when it all starts to happen. Look what happened on theTEDxMaastricht conference i have set up about the future of health have a look at the video’s and see how important it is to own the data of your own health. See what is happening and is ignited by e-patients like e-PatientDave.

We need global players to be in there since it is my strong opinion that PHR’s (Personal Health Records) are changing healthcare into a more open system, due to the fact that Google, Microsoft are (were) in this market, more and more data have come available in EHR-systems in hospitals, GP’s etc. Next to that there also has to be a standarized set of data for exchange. Just like Microsoft has set a very much used standard with their .CSV format both Google and Microsoft were on track setting a new one : syncing with Google Health and Microsoft Healthvault. 

So where does things brings Microsoft’s HealthVault : alone ? That is to be seen, might even be that due to the disappearance of Google in the arena, the PHR business collapses or might even starts to boost. The future will tell us. 

What is your take on this ? please share it with us below.

 

Official Google Blog:

An update on Google Health and Google PowerMeter

6/24/2011 11:01:00 AM

In the coming months, we’re going to retire two products that didn’t catch on the way we would have hoped, but did serve as influential models: Google Health (retiring January 1, 2012; data available for download through January 1, 2013) and Google PowerMeter (retiring September 16, 2011). Both were based on the idea that with more and better information, people can make smarter choices, whether in regard to managing personal health and wellness, or saving money and conserving energy at home. While they didn’t scale as we had hoped, we believe they did highlight the importance of access to information in areas where it’s traditionally been difficult.

We’re making this announcement well in advance to give you plenty of time to download the information you might have stored in either product or to transfer it to another service, and we’re making it easy for you to do it in a variety of formats. More on how that works below.

More broadly, we remain committed as always to helping people around the world access and use information pertinent to them. We’ll continue to pursue this goal and to encourage government and industry to do the same.

Google Health
When we launched Google Health, our goal was to create a service that would give people access to their personal health and wellness information. We wanted to translate our successful consumer-centered approach from other domains to healthcare and have a real impact on the day-to-day health experiences of millions of our users.

Now, with a few years of experience, we’ve observed that Google Health is not having the broad impact that we hoped it would. There has been adoption among certain groups of users like tech-savvy patients and their caregivers, and more recently fitness and wellness enthusiasts. But we haven’t found a way to translate that limited usage into widespread adoption in the daily health routines of millions of people. That’s why we’ve made the difficult decision to discontinue the Google Health service. We’ll continue to operate the Google Health site as usual through January 1, 2012, and we’ll provide an ongoing way for people to download their health data for an additional year beyond that, through January 1, 2013. Any data that remains in Google Health after that point will be permanently deleted.

If you’re a Google Health user, we’ve made it easy for you to retrieve your data from Google Health any time before January 1, 2013. Just go to the site to download your information in any of several formats: you can print and save it, or transfer it to other services that support industry-standard data formats. Available formats include:

  • Printable PDF including all the records in your Google Health profile
  • Industry-standard Continuity of Care Record (CCR) XML that can be imported into other personal health tools such as Microsoft® HealthVault™
  • Comma-separated value (CSV) files that can be imported into spreadsheets and database programs for ongoing tracking and graphing
  • HTML and XML versions of the original “data notices” sent to your Google Health profile by linked data providers
  • A unified ZIP archive that includes all files you’ve uploaded to your profile, plus all of the formats above

Over the coming weeks we’ll also be adding the ability to directly transfer your health data to other services that support the Direct Project protocol, an emerging open standard for efficient health data exchange. And while we’ll discontinue the Google Health service at the beginning of 2012, we’ll keep these download options available for one more year, through the start of 2013. This approach to download and transfer capability is part of Google’s strong commitment to data liberation principles: providing free and easy ways for users to maintain control of their data and move it out of Google’s services at any time.

In the end, while we weren’t able to create the impact we wanted with Google Health, we hope it has raised the visibility of the role of the empowered consumer in their own care. We continue to be strong believers in the role information plays in healthcare and in improving the way people manage their health, and we’re always working to improve our search quality for the millions of users who come to Google every day to get answers to their health and wellness queries.

 

 

“A well informed patient is fiction …” he said

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…..