One of the quiet forces taking shape in health care reform is the relationship patients have with their own health and medical data–their PHI. An article in the New York Times on 3/31/15, The Healing Power of Your Own Medical Records, offers a look at some of the efforts being made to both connect patients/consumers with their own records and the small number of people trying to take charge of their own information. Why is this important? As consumers begin to take charge of their own information, there’s an important opportunity for the chiropractic profession to lead the way–if we can mobilize around the opportunity.
PHI (protected or personal health information) in its simplest definition is any data that can be used to identify someone. In this day and age, that is more complex than it used to be, because there is so much information out there on the Internet that can be used as vectors to identify people. And PHI isn’t just an individual bit of information, it’s also the context of how it’s recorded, stored and transmitted: if my blood pressure reading is recorded on a document without anything else, that’s not PHI. But if it’s recorded with a unique record identifier, or my ZIP code, that’s PHI. If it’s in an email and the IP address of the originating computer is recorded, that’s PHI. (An important news item in the New York Times here told the story of how easy it is to find out people’s identities even from their own supposedly otherwise-‘blinded’ genetic information. Sobering.)
Why does all this matter? Patient PHI has really been monetized and commoditized without fully informed consent; payers and delivery systems routinely make money by permitting patient data to be mined for information on conditions, treatments, drugs, and so on. And the very business models of electronic health records make the information isolated and hard to access or combine: for years the thinking has been that ‘control the information and you control the patient,’ so there’s been a business disincentive to make electronic records ‘interoperable,’ or easy to move or copy between different systems. So there’s a lot of information being moved around, really, and most people have no idea about how much of ‘them’ is out there.
But patient/consumers are starting to wake up to the reality of what’s happening to their PHI and taking small steps to begin to reclaim ownership and stewardship of their own information. What’s the opportunity for doctors of chiropractic? As patients begin to collect their own information, if we look at our record keeping and ask ourselves if the very way we record PHI is an opportunity to educate them about chiropractic and its benefits, we might find we are missing an important chance to improve our care–and strengthen the profession.
It’s important to note that just giving people access to records isn’t enough. Early efforts like Microsoft HealthVault and Google Health show that just giving people access to their information doesn’t necessarily change what they do with it. People need guidance and understanding.
Some time in the early 1990s (I don’t remember exactly when) I rewrote one of the first versions of Medisoft for my own practice, changing all the medical information to chiropractic terms. I gave every new patient a printout of their initial findings with instructions for home care, the rationale for any treatment plan I recommended, outcome goals and active/home care requirements. I had them sign the documents so there was evidence of what we’d covered. I also encouraged people to ask for copies of their own records, but I quickly came to realize that the way I took down their information was not helpful to them. We use too much unique vocabulary and profession-specific shorthand. So today one of the questions we should be asking ourselves is this: if my patient got a copy of their own records, what would they be able to understand? How would the context of the care they’re receiving–and their outcomes, progress and prognosis–be able to be understood? How well might they then turn around and explain to friends and family how chiropractic is improving their health and well-being?
These are important questions because anyone in practice understands how little people actually retain of what you tell them, and how often it needs to be reinforced. Where chiropractic is concerned, and especially because many of the benefits are not symptom-based, the opportunity is to treat our own patient records as an opportunity for education, engagement, and–effectively–promotion. This isn’t to say that someone’s record should become an advertising campaign, but it’s probably not an overstatement to say that every treatment plan and progress note set should restate or highlight the rationale for treatment, and chronicle the changes and benefits (or, in fairness, their absence) due to chiropractic care.
But the underlying, most powerful dynamic is this: if we begin to see our patients as legitimate owners of their own PHI and our role more as stewards or custodians of their data, it’s likely we’ll view how we record and care for that information in a different way. And because we’re reaching such a small portion of the population that needs and could benefit from chiropractic care, it’s a potentially important way to communicate, extend our reach and improve the long-term prospects of the profession.