What if I were to make a note of those occasional strange things going on in my body? You know, those annoying aches and pains that are hardly worthy of notice at the time. On the other hand, what if just a few are precursors of something going wrong? What if a few small symptoms could signal the need for attention to prevent a heart attack, stroke or some other potentially deadly disease? Or just identify something, the progress of which can be slowed by early medication? What if thousands of people made occasional notes in their PHR and these notes were examined after they had significant medical events? Most posts would probably be insignificant, but what if some proved to be useful? We have little or no access to that kind of data today, but we could.
What if a large number of yoga places were to log attendance electronically (mine does now) and then periodically post when attendees took what level and type of class to their PHR? (With their permission, of course.) Again, a large amount of data that might correlate to risks or significant benefits. There are at least two useful ways of looking at that type of data. Does yoga create a risk or benefit? And, does an unrelated change in medication or lifestyle have more or less impact on people who practice yoga than people who have no record of similar activity.
What if I could use an iPhone application to keep track of when and how long I bicycle, my top speed and average and how many feet I climb? What if I could add the results from my heart monitor? And what if I did that for several years? Risks? Benefits? Correlations with medical events?
What if I went to an acupuncturist and he included notes about what we did and why and I made notes before and after about what was happening to me?
All of this, and certainly more, is possible. Indivio, HealthVault and Google Health and their expanding network of participants such as CVS and Walgreen are moving us in that direction.
Note that all of the data collection discussed here is outside the normal scope of electronic medical records and that the value of almost all of it arises out of the ability to correlate it after a medical event with data that is within the scope EMRs.
Narrow-scoped EMRs will be able tell public health authorities how many people go to the hospital for a spreading virus like H1N1 and how long they are there. EMRs will also report how many people go to see their doctor and whether they go multiple times. PHRs could add data about how many people self-diagnose themselves with the flu. They could tell public health how many of these self-diagnosed and how many doctor-diagnosed victims stay home and for how long or go to work despite their symptoms. Also, which family member brought it home and how did it progress through the family? There has to be a pony or two in there somewhere.
Expanding the scope doesn’t mean that the amount of effort or cost to system owners will increase. Proprietary systems will have to develop interfaces to other proprietary systems, add one more to access Indivio based systems won’t have much impact. Expanding the scope may even decrease costs a bit by moving some application development and maintenance from proprietary systems to PHRs. At a high level the cost benefit is potentially very attractive. It would be a shame to miss this opportunity because of a lack of creativity and overly narrow focus.