In only a few weeks the Medinfo 2013 conference will begin in Copenhagen, Denmark. This is one of the big, international conferences in medical informatics (or health informatics as I prefer to say). This year will be my third time visiting Medinfo (since it’s only been every third year, the opportunities have not been that many). The list of attendants is of course long, and many healthcare professionals gone IT and IT-professionals gone healthcare, all with a research interest of course, meet and exchange ideas and get inspired. Great fun.
This year, I am involved in the organizing of a workshop which will take place on the 22nd of August. The title is “Experiences of Novel e-Health Services for Patients – Pros, Cons and Future Challenges” and we start off by stating that it is crucial to involve the patient in the development of patient accessible eHealth systems. Now, I collaborate a lot with patients in my research, trying my very best to actively involve them in the design and development of new and (fingers crossed) useful ehealth solutions. However, I rarely see patients at these types of conferences. Or for that matter, other end-users of the health information systems discussed. So, we decided to try to extend the scope of our workshop outside the traditional boundaries of the research conference by organizing a pre-workshop twitter chat aiming to engage all those with an interest in these issues who can not actually attend the workshop. The goal is to continue the online discussions during the workshop and hopefully also after. So please, if you feel that this is a topic you are interested in – join! Participate!
More information on how to take part in the twitter chat can be found here. We will be using the hash tag #EHR4U an abbreviation for Electronic Health Records for You. If twitter is not your thing – why not write a comment here – what’s your view on patients online access to their electronic health records?
Participatory eHealth 
I am really glad to have stumbled upon your blog. I don’t usually comment on other people’s posts but felt it necessary to say thank you for ensuring that the patient/person who uses services’ voice isn’t lost in the other competing dialogues about e-health.
I think we are at a real risk of being too wrapped up with other (albeit just as e-heath important) issues to take note of the person who has to seek help from healthcare services for themselves or a family member. I hope your conference makes it easy for people to voice their views on accessing and influencing information about their health and healthcare.
Thank you so much for kind comment, Sarah! I completely agree with you that the actual end-user’s voice is rarely heard when discussing the development and implementation of e-health. Researchers and/or developers in the field tend to focus a lot on technical issues and collaborate almost exclusively with health care professionals, even when developing tools/services to be used by patients. I believe we need to open the room for discussion and participation and I think we got a lot of good debates going at Medinfo. But we still have a long road ahead of us – hope to hear more of your very important work (had a look at your blog and it looks great!) as we continue!
The problem all patient have is that their Healthcare Records are scattered everywhere. Their Physician/Doctor/GP. Then there is the Hospitals Electronic Medical Record Systems with “Portals” for patients to view a small fraction of the information which is held.
There is also an increase in the use of smart phone healthcare apps, all monitoring your every move, mouthful and vital signs.
And if you are lucky enough to get hold of them, do you understand the results let alone the clinical language used.
Let me clearly state now, I am not a company trying to sell the next best thing in the IT world, but a person, a patient, a carer that have pondered this for many years.
So how do I keep my Health records all in one place?
You Tube, yes you did hear me right. Not the safest place I know but at least I know that any healthcare professional around the world can access this if I fall ill.
An example of what it looks like:
Once you know what the basic colours mean then you can understand it, yes even if you don’t speak English. And yes a child can use it.
So I decided that I also wanted some sort of version on my Tablet and my iPhone, and to be a bit more intuitive.
This shows how I can interact and hold more details against my conditions and medications and how I can interact with my Doctor if needed.
Is it future proof?
Yes!
With Google glass you could in theory interact whilst you are working!
If only we as patients receive data back from our Doctors, hospitals, even our dentists in an electronic format we could given the right tools look after our health records and share it with whom we choose no matter where we are in the world.
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