Why Are Personal Health Records Slow to Adopt?

Self-service kiosks seem to be popping up everywhere.  I recall when they were a novelty just a decade ago.  Today, it’s the norm.  From travel to groceries, consumers are able to obtain services and purchase products with little human intervention.  Recently, we have even seen the car rental market adopt this approach.  Interestingly enough, when renting a car, the line was still with the service representative while kiosks were empty.  I was prompted from the back of the line to give the kiosk a try.  So with hesitation, I ventured to give it a shot.  Different from the classic self-service kiosk, there was a video screen and a customer service representative on the other end.  I picked up the phone and began the process, which was really no different than if I had stayed in line and talked with a representative in person.  Ten minutes later, I was driving my rental car while people were still waiting in line.  I’ll never go back and stand in that line.  My question is, why hasn’t self-service taken off in health care?

Adoption of self-service technology, be it the kiosk or the personal health record (PHR), is anemic at best.  I recall when Google Health was launched; I was excited at the prospect of empowering consumers to manage their own health.  That is…”commoditize” health information and unlock it from the silos of individual health organizations.  After trying several other products, which were all comparable in features, I settled on Google primarily because they had connectors to my health system.  Therefore, my data could be uploaded automatically from my doctor’s health system’s electronic health record.  Though it worked, the frustration I had stemmed from the fact that I had to authorize my healthcare system to share data with Google.  I had to physically sign up for the service at the hospital, configure the application to share it with Google, and then I had to keep it up to date by logging into the hospital service to initiate each transfer.  This represented a high barrier for me in accessibility and maintainability of my own health information.  I believe many of these barriers are in response to HIPAA, a law written to protect the privacy and security of patient health data.  Whether it was taken to the extreme or not, it was in large part responsible for the barriers that made it burdensome to access my own record outside of the health system.

Sadly, by the time I made the adjustments and worked out a process, Google Health was shut down.  I decided not to use a personal health record outside of the health system, as I did not want to lose my data again.  That in itself shatters my confidence in this market as a service separate of the hospital system.  However, if you are seen by different hospital systems, it is difficult to obtain a consolidated view of your health unless you have a 3rd party product that is health system agnostic.  The benefits were simply not worth the risk for me and I just did not want to go through the Google Health experience again.  I did sign up for the personal health record within the two health systems for which I am seen.  Sadly, my records were blank in both.  They heavily advertised the benefits of the blue button, however clicking it resulted in no data.  Calls to the help desk resulted in no resolution for what I was told a problem with my Identity.  Because there is a mismatch between my Identity and the systems that feed into the personal health record, nothing is displayed. If they are struggling on accurately correlating my record within their own system to their own personal health record, it makes me wonder if my doctor has all the information they need when they are seeing me.  Herein lies the other issue.  The complexity of fragmented health information systems and its data are bleeding into my consumer experience making it a painful one at best.

As a provider, when I see a patient I always ask what medications they are on, whether they are part of the health system or outside of the health system.  Commonly, they are not sure of the name of the prescription.  Some have them written down on a piece of paper while others have them in their smartphone.  For those who had it in their smartphone I asked if it was a personal health record, all of them replied it was simply a note pad.  This leads me to believe the need is there but for some reason, despite the number of personal health records on the market, there is a disconnect between the supply and demand.  Having worked on a number of health records, I believe it is predominantly an issue of usability and utility.  While patients are looking for simplicity, personal health records are often as complex as electronic health records.  Once again, the challenges within the industry with regard to human factors are affecting the consumer experience.  Arguably, when I see a personal health record, it makes sense to me as a health care provider.  This is where I believe the problem is.  It is built by clinicians for clinicians rather than for patients.  It communicates care very similarly to how clinicians would communicate amongst each other rather than in terms the patient understand.  Don’t get me wrong, patients are smarter on health than ever before and services like WebMD has really empowered the consumer.  However, the personal health record is still not consumer oriented.  Really, it’s a mirror of what is in the medical record that takes trained professionals to understand and interpret.

The question is “so what” for the consumer.  What should they do with the information?  I’ve heard many of the arguments that by having access they can provide that record to other health care providers.  While that is a true statement, it is not one of empowerment.  In fact, it is a symptom of the health system failing to share information when appropriate and moving that burden to the user.  While I appreciate that given the current state of health information exchange in the US, I firmly believe it is to help patients make better decisions about their own health.  This means for personal health records to be adopted, they must be more relevant to the patient.

We have seen personal health records providing tools to schedule appointments, which are a great move forward, but I’m looking for better context to the health information that helps the patient understand what it means and what they should do in response.  That is not to say that personal health records can take the place of the provider-patient relationship and effective communication.  However, if the system knows you are age 50 and have no other risk factors, you should get a colonoscopy and the system will recommend it.  More importantly, easily link to consumer based information so they can understand why they should have it and the risk of choosing otherwise.  As part of the patient decision workflow, make it simple to schedule a call to speak with their physician.  Understanding the logistical challenges, the use of secure messaging to communicate virtually can save the patient from having to come in to speak with their physician in person prior to scheduling a colonoscopy.  Then, as the appointment nears, the system can provide patient reminders in the communication medium that works best…be it automated call, SMS text, email, or even social media.  There are a series of actions after a visit where the personal health record can be very relevant in helping to coordinate and communicate care far ahead of the results of the colonoscopy being posted.  By doing so, their information is put into context and the patient is empowered to use that information where it best serves them.

So why aren’t self-service kiosks and related technologies like personal health records adopted?  Well this is not a trivial question and the answer is far more complex than my anecdotal accounts.  Certainly, the culture of medicine is a large factor.  I presented an article about the patient vs. consumer and consumerism in health also plays a role.  Yes, they are patients, but they are also consumers of services and therefore we should be patient advocates as well as consumer advocates.  Next, interpretations of HIPAA have resulted in barriers to sharing health information.  Until we get a balance of security, privacy and access, the burden of accessibility will remain on the patient.  Third, self-service products for health need to be designed by human factors engineers with direct input from patients,  not clinicians or technicians alone.  Don’t get me wrong; you have to have a clinically accurate product so you need to involve clinicians in the design process.  However, if designs are left to clinicians and software developers alone, they will continue to communicate to other clinicians and techies rather than communicate to patients.  Fourth, the complexities of the personal health record are a result of the complexities of electronic health records.  With data fragmented across multiple systems within a hospital setting, they must first heal and integrate their information systems in order for the personal health record to work.  Short of that, the symptoms of the personal health record simply echo those of the underlying systems, which can be traced as a root cause of data issues. Lastly, personal health records must to have better utility.  Personal health records have been rather passive in terms of just presenting the information or mirroring what is in the electronic health record.  We must transform the experience to one that is actionable and understandable as in the colonoscopy example that helps the patient make better decisions about their health then initiate and manage the services that surround it.