Shoe boxes should be for shoes, not medical records

If you ask a person coping with a chronic illness for their medical records, they may take out a shoebox with a neatly organized papers and CDs.  They hope the next doctor or nurse will open the box, look inside and help them.  This almost never happens.

What's in your box?

There is simply no time for providers to put this information into a meaningful story.  The provider tends to reorder labs, and begin from scratch.  

Patients and providers agree this is absurd.  Records should be immediately at the time of care.  This would enable better, more cost effective care.  Industry has spent decades trying to solve this problem, but it is a work in progress.

Centralized versus decentralized records.

In part, this failure reflects American healthcare's focus on the doctor and the hospital rather than the patient.  There is an expectation that others will care for us, rather than engage us.  Medical record solutions tend to pass centrally from patient, to doctor, to EMR, to a central clearing house (sometimes called an health information exchange, HIE).  

HIE, centralized healthcare records

HIEs sound like a great idea.  If the patient goes to 2 facilities or 2 different doctors, records would magically be collected and viewable by all participating facilities.  Unfortunately, HIEs are more concept than reality.  HIEs require high level collaboration from competing healthcare systems.  Further, there is first adopter risk.   Imagine buying the first fax- who would you send to? 

An alternative solution would centered around the patient.  In this case, the patient acts to collect data about themselves.  But rather than the shoe box, the information is organized so that others use it effectively. 

Google and Microsoft in fact took this approach and spent billions to create PHRs- this has largely been a failed effort  

Google Health shut down after several years

The medical apps industry is another approach.  Apps allow the people to collect all sorts of data about themselves (weight, blood pressure, physical activity) People can look at the information themselves or  present it to their practitioner.  As yet, industry has not achieve significant adoption or investor value.  

Both apps and PHR currently reach the wrong market. Apps and PHR tend to be used by the "super fit," the people trying to obtain that last little bit of potential immortality.  Although the super fit are a market, they are not the market insurers and providers are trying to reach.  The people who need PHR and apps, the sick, tend not to use them.  These people are typically older and less tech savvy, they tend to be less focused on their "wellness."  

Portal or PHR?

Hospitals are currently implementing portals, web based tools for patients and providers to see medical records. Healthcare systems view portal as an evolving service expectation, a chance to build customer loyalty.  However, this strategy is limited.  Portal is an extension of the hospital EMR.  Current portals do not aggregate records across the continuum or enable the patient to collect information about themselves.  

Would it be better if hospitals provided PHR?  This could be a card given to patients leading all providers, those from the hospital and their competitors, a web site where they could view and enter enter information for the patient.  Rather than centralize the information via an exchange, this would decentralize efforts around the patient.  At a minimum, this would allow providers to note that the patient received care and there are records to share.  Better would be an upload of records to the PHR; this is already possible via an accepted standard (CCD).  This would not replace EMR (which provide necessary documentation, scheduling and billing) but instead supplement care documentation.

Decentralized, Collaborative PHR records could supplement EMRs.
Providers across the continuum  could add to the record for the patient.
Most PHR ask the patient to do all the work currently

Compassionate Capitalism- towards a sustainable business model for collaborative healthcare records 

As mentioned earlier, centralized health exchanges, with a centralized business models, have largely failed.  The return on investment ratio for the early adopters has not enabled wide spread adoption.  However, decentralizing the offering may have unique benefits for a healthcare system.  Registration in a system showing patients their hospital records, occurrences or records from other providers  as well as chance to record their own observations is value, something patients can't get or can't maintain (eg...the Microsoft and Google offerings) on their own.  Building brand through patient value equates to loyalty. Further, collaboration across the continuum, provides the necessary infrastructure for value based  cost effective care delivery.  This is not rocket science, but rather a repurposing of existing market tools.