Thinking about Personal Health Records beyond the health care system

Updated 9/10/08: Broken link below fixed (the one that went here).

As I have mentioned previously on this blog, and as is mentioned on the Certification Commission for Health Information Technology Website, I am Co-chair of CCHIT’s first Workgroup covering Personal Health Records this year, along with Lory Wood from the Good Health Network.

As you can tell from the list of members on the workgroup , the expertise represented is very impressive in its breadth, and its national scope, and we have all been working hard to support the first certification process for Personal Health Records in 2009. I encourage anyone interested in PHR Certification to follow its course through CCHIT communications on its web site and other venues; I won’t be discussing specifics of certification here.

What I am writing about is how this process is changing my understanding of the role of personal health records beyond the health system.

A great example is in the case of emergency responders – I recently posted my experience being one. Earlier this year, I commented on the value of a personal health record in another incident I was a part of, and it is interesting for me to look at what I said., which was around the value of a personal health record in preventing emergencies by promoting better patient engagement around their therapies. I still believe in that.

While that’s waiting to happen though, what about the times when an employee might have an emergency at the worksite or a person might suffer a car crash or other incident while traveling? It’s possible that in the incident I responded to earlier this year that the result would be a report back to family that their mother/father/daughter/son/brother/sister had died while co-workers and responders were frantically working to assess their medical condition.

Imagine what it might be like for an employee in a large big-box retailer to be able to identify parts of their medical history to be made available on an emergency basis to their employer, especially if the worksite is large enough that their personal effects are typically very far from where they work. Many of us fill out emergency contact information when we complete new-employment paperwork. Usually this is a piece of paper, and in most cases provides a thin buffer of hope that critical information about us will be available if it’s needed at a worksite emergency.

The same goes for automobile crashes, because a vehicle identification number by itself is often not enough to positively identify a crash victim or provide relevant medical information at a critical time of need. Several states (Florida and Ohio) and the automotive industry have thought about this. As Larry Williams explained to me, manufacturers have thought about the car ownership experience and their desire to provide support at its lowest point by providing methods for consumers to connect identification and emergency contact information to their vehicle IDs. The innovation in health care that comes from industries who are built on serving consumers primarily is interesting, isn’t it.

Both the American Health Information Community and IHE have produced a use case and white paper respectively, relevant to the potential role of a personal health record beyond a tethered connection to a primary care provider, that describe an ability for a person to tie their medical history to their vehicle’s identification number, for positive identification and medical attention. This is where a personal health record might integrate, at the discretion of the consumer.

All of this presumes appropriate privacy protections, of course, such that linkage and management of the information is under the control of the consumer.

This thinking is reinforcing in me the idea that a patient’s medical home is really the place where they live, work, and play. The promise of the personal health record is that people can leverage their personal health information at the right place and time to be enabled to do what’s most important to them, while being supported by a broad diversity of care providers, who at any given time are nurses, doctors, co-workers, emergency responders, families, and communities. This is a good thing to learn.

4 Replies to “Thinking about Personal Health Records beyond the health care system”

  1. It is with great interest that I have read your comments about crash victims, emergency care, and survivability. The health information management professionals in Missouri have worked with our state organization (MHIMA) to form a task force that is now working with the Missouri DOT to make post-crash survivability one of the essential strategies of the Missorui Blueprint for Safer Roadways. Some of our initial work along with responses from MoDOT, the National Association of State EMS Officials, the Association of Public Safety Communications Officials-International, and the International Association of Chiefs of Police can be located at http://www.mohima.org under "News". The IHE White Paper is also posted. The work in which you are involved is vital to this effort of helping identify crash victims and provide the necessary care.

    Thank you for taking the time to bring this aspect of personal health records to the forefront. Over and over we continue to see the benefit of personal health records and how they empower consumers.

  2. Thanks, Marsha, for taking the time to comment, and provide information about how communities could harness personal health records to improve health in a diversity of situations beyond what is traditionally thought of "health care." I think this increased knowledge is a good outcome of a certification process,

    Ted

  3. Ted–what about a microchip? We put them in our dogs, horses..why not a chip that can be electronically updated remotely, inserted under the skin..the 4 gig chip in my cellphone right now is 2mmx6mmx13mm–. The locus of my health care is me, and, with this approach, harder for the records to get lost…and, sometimes, I drive my friend's car..

    I absolutely agree with you, the current medical home idea is still too Dr Centric… it's transitional..as computing evolves, the depth of memory will be electronic, and people will, ultimately come and go as agents in our health journeys, as they do now, and the 'personal' will be enabled by enriched IT and UI. May seem strange to those us born before 1980, but those born after will expect it….

  4. Paulanne,

    I think you have the right idea around this, which is that in the future, a consumer may decide to link their personal health information to a car, to their employment, or to another device, so that it can be used to help them stay healthy. This example helped me learn about was "consumer controlled" meant.

    As with the work I am doing on hypertension, I am hopeful, and interested to see how truly putting the data in the hands of the consumer will change the dynamic of chronic illness management to one where the physician asks the patient for the data and what they think of it rather than telling the patient what their data is and what they should do about it.

    For those readers who don't know Paulanne, she's an experienced Family Practitioner at Kaiser Permanente Colorado with extensive information technology experience and a deep understanding of the value of empowering patients.

    Paulanne, I hope you will follow the work of this Workgroup and provide public commentary when draft criteria are released for viewing on the CCHIT website,

    Ted

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