When I was at HC2004 or 2005 I was given a copy of the Medical Informatics Yearbook 2003 from the British Computer Society - Nursing Specialist Group stand. Within this volume of key papers for the year April 2001 - March 2002 I found the following:
Kim MI, Johnson KB. Personal Health Records: Evaluation of Functionality and Utility. Journal of the American Medical Informatics Association. 2002. Mar-Apr; 9(2):171-180. Selected for inclusion in the IMIA 2003 Yearbook of Medical Informatics.The paper identified candidate Personal Health Records [PHRs], then developed criteria examining the entry and display of data elements necessary for the PHRs to serve as adequate representations of information. Then in the final third phase a selected group of PHRs were assessed for their functionality and utility (p.370). Of the 12 PHRs assessed I thought it would be interesting to check their current status (this was a quick visit to the published domains).
|Dr. I-Net||My Medical Record||www.drinet.com/||A good start! Still operational domain redirects from original www.aboutmyhealth.com Continues to offer a PHR.|
|HealthCompass:||Lifelong Health Record||www.healthcompassnet.com||While there are several site using 'Health Compass' the original version was not obvious.|
|MedicalEdge||Medical Register||www.medicaledge.com/||Domain currently offers support to physicians, so a PHR may be part of a package?|
|MedicalRecord.com||Your Medical Record||www.medicalrecord.com||This now appears to be a directory to electronic medical records.|
|MedicData||MedicData||www.medicdata.com/||This does not appear to offer a PHR and the homepage is 'under construction'. It looks like the domain may have a new owner.|
|Medscape AboutMyHealth||Personal Health Record||www.aboutmyhealth.com/||Now leads to GE Healthcare.|
|myhealthnotes.com||Personal Health Manager||www.myhealthnotes.com/||Server not found.|
|PersonalMD||My Medical Records||www.personalmd.com||Retired - leads to: www.eheandme.com/personalmd_announcement.html|
|TheDailyApple||Health Records||www.thedailyapple.com/||Social networking is vital to well-being but no PHR here.|
|VistaLink||Health Profile||vistalink.com||Domain for sale.|
|WebMD||WebMD||www.webmd.com/||Very much alive and kicking commercially, but my health record / PHR not in immediately in evidence.|
|Wellmed.com||Health Record||www.wellmed.com||This site leads to http://www.webmdhealthservices.com/|
Kim and Johnson provide several lessons as a high quality contribution to the medical informatics literature. From the above we see that while we talk about timeliness in terms of the written record, time takes on a series of new meanings when it comes to electronic records, media, commercial companies and clearly the internet.
As I read the paper and reflected on the past decade other things fell into focus. At the end of the day a PHR should be what it says - personal. Reading Kim and Johnson this did not stop them looking at the PHRs from the perspective of doctors and informatics practitioners. There is nothing wrong with this. Although developers and political masters quite rightly seek to engage with the user, espouse usability and user testing - a system is aimed at a community.
If title [personal] follows function [record] and form [electronic] follows function then what do we have?
Don't worry if you're lost, me too (I'm musing again); let's add the fog....
It's crucial to know what's going on over the fence (similarly sometimes it helps to climb a tree). In this case the person in the form of patient is not the only consumer of the information in the record.
This is the point: systems are about a user AND a stakeholder community. Stakeholder is a much maligned word, found on the lips of those seeking to reach and engage remote ('difficult' to reach) community groups. It has a definite role here though.
Every health discipline has its record, that is a professional must. So in effect you have a series of 'X' -HRs. On paper they were - and remain in many cases - a mess. What we should have then is a hybrid health record that depending on the user morphs itself accordingly. But what is the point in pointing to users and stakeholders? Well, conceptually how far is personal from medical (nursing...) and how far again to personality? Add to the mix the question of where patient, well-being and health fit in to the management of long term medical conditions as per the critieria of Kim and Johnson, accurate entry of medicines, medical conditions, lab tests, monitoring ... and you see what is frequently a record breaking task.
This is (or was*) the challenge: to transform something that is generically personal (with the potential contradiction this implies) to something that is personalised as in 'I'.
*Part II to follow.