- learn about the conceptual framework Hodges' model. A tool that can help integrate HEALTH and SOCIAL CARE, INFORMATICS and EDUCATION. The model is situated, facilitates person-centredness, integrated - holistic care and reflective practice. A new site using Drupal is an ongoing aim - the creation of a reflective workbench. Email: h2cmng @ yahoo.co.uk Welcome

Saturday, April 21, 2012

Personal Health Records: Part I - revisiting Kim and Johnson 2002

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).

Several Personal Health Records 2002 - 2012
Web Site
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.

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