There is something deeply disturbing about the existence of big fat dossiers of personal information, meticulously collected over a lifetime, and stored under lock and key in dark places you are not allowed to enter. There is something degrading and dehumanizing when those secret files, which contain the most intimate details about you, your children and your loved ones, are only accessible to entities empowered to make life and death decisions for you and for those you care about most. A free society cannot allow this to happen and remain free, but this is a lesson we are destined to painfully learn in the future.
The good news is that when those dossiers are your medical records, our government acted decisively to ensure that every American has a right to not just view the collected information, but also to demand and obtain a copy of the records. Every medical facility, from the largest and most powerful conglomerate, to the humblest rural doctor, is required by law to fork over copies of your medical records whenever you ask for them. Few people ever asked for their medical records, and of those who did ask, many experienced difficulties and delays. If you ever visited the medical records floor in a hospital, you should be able to figure out why.
But that is all in the past now. Today, medical records are electronic (at least the newer portions), and the very first stage of the Meaningful Use program included a mandatory (core) requirement that medical facilities should provide at least 50% of patients with an electronic copy of their health information “upon request”, and an optional (menu) requirement that at least 10% of patients should have timely electronic access to their health information. Presumably the core requirement was intended to be a stopgap measure, until self-service patient portals are fully deployed, providing timely access to medical records pretty much on demand.
By the time Meaningful Use stage 2 rolled out, those two requirements were bundled into one comprehensive core measure requiring that at least 50% of patients should have timely electronic access to their health information so they can look at it, download it or even send it somewhere else, if they so desire. That sounded nice enough, and once you stand up your portal, and find a way to let your patients know that it’s available (e.g. certified mail to all patients, flyer attached to registration forms, etc.), you can easily state that practically 100% of patients have timely access to their records (i.e. the ability, right, or permission to approach, enter, or use). Unfortunately, providing access to medical records didn’t seem like a good stopping point, so Meaningful Use stage 2 added a mandatory requirement that 5% of patients actually access those records and view, download, or transmit them to another party.
Just to remind you, Meaningful Use is providing cash payments to physicians who comply with all requirements, so effectively doctors were getting paid to make their patients log into the patient portal. Past tense, because the CMS recently announced its intention to eliminate this requirement and stick with letting people choose whether they wish to access their medical records or not, and not penalize physicians for letting their patients exercise free will. Along with the sigh of relief from physician organizations, came a roar of indignation from the patient/data liberation thought leadership, because nothing spells patient empowerment more than the government forcing doctors to force patients to look at a webpage.
There are very good reasons to wish that patients know about patient portals and put them to good use. For example a study at Kaiser, showed improved medication adherence for diabetic patients who used patient portals to request renewals for their meds. That’s certainly a good thing, although nobody checked to see if the more adherent patients also perused their medical records while ordering new meds. A more recent literature review of patient portals, reports some improvements in quality, but all in all it finds “weak results on medical outcomes”. A brand new study in JAMIA, examined portal usage of older patients (>55) in Chicago. The study found that while “most patients (93.4%) had a patient portal access code generated for them”, only “57.5% registered their accounts”. Among those who chose to register, the most popular portal activities were messaging the doctor, checking test results and requesting medication renewals. Browsing medical records came in dead last at a barely significant number.
It may be beneficial to separate people’s desire to conduct electronic transactions with their doctors, as we do in all other aspects of life, from our need to examine medical records, or to download copies of the same, because obviously we enjoy the former, but seem to have no interest in the latter. If you are still not sure this assessment is correct, a survey conducted by the Brookings Institution had the largely unintended consequence of settling the debate. Brookings surveyors found that “68 percent of the respondents are not willing to pay anything for having access to their medical data”, and that “the average valuation of the medical data ranges between $5 and $7.2”. These findings are important because when people are asked in survey after survey if they want their medical data, the responses are overwhelmingly positive, but meaningless at the same time. If I asked you whether you would want a pulsating shower head, you would probably say yes (why not), but until you put a price on that head, I won’t know if you really want it, or if you just agree to pick it up if you found it on the sidewalk, and probably never use it. Now we know.
And we shouldn’t be surprised. Contrary to what you may have heard in your Twitter/tradeshow/conference echo chamber, most people have no interest in running around with a miniature ICU strapped to their wrist, and couldn’t care less about the difference between lymphocytes and monocytes. That’s because most people, as strange as this may sound to some, have better things to do, such as putting food on the table and a roof over their children’s heads. And if they want to see their charts once in a while, maybe keep a personal copy, or send the information to a new doctor, they should be able to do so. That’s what timely electronic access to health information means, and that’s what the CMS is demanding from all medical facilities, and that’s how the right to access, created by HIPAA in 2000, is finally implemented today.
Should doctors be paid to make us exercise this right to access, and should they be penalized if we choose not to do so? Other than this proposition sounding rather insane, the JAMIA study indicates that doctors to the poor and underserved, who are already penalized for not having healthy and well educated patients, would be disproportionately penalized under this model. Besides, there is a huge difference between a right and an obligation. We have a right to vote, and arguably, if more of us exercised that right wisely, our collective health could be vastly improved in many ways. Should we require that each physician registers at least 5% of their patients to vote?
There is something deeply disturbing about a small group of industry insiders, attempting to impose their views of how we should behave, because they know what’s good for us. There is something cynical and ironic when the people who rose against the paternalistic doctor model, propose to have the government use doctors to push patients into activities that do not conform to “patient values and cultural preferences”, and have little to no scientific basis to boot. Whereas a democratic government has the duty to pay contractors for building and deploying tools to facilitate the exercise of legal rights by the people, it should not have the power to bribe said contractors for delivering certain quotas of “compliant” citizens, at the behest of interest groups. A free society cannot allow this to happen and remain free, and this is a lesson we should learn today.
Margalit Gur-Arie is an author, entrepreneur and a partner at BizMed
“That’s because most people, as strange as this may sound to some, have better things to do, such as putting food on the table and a roof over their children’s heads.”
The optimizers always view the world from their little rational bubbles.
“our government acted decisively to ensure that every American has a right to not just view the collected information, but also to demand and obtain a copy of the records. Every medical facility, from the largest and most powerful conglomerate, to the humblest rural doctor, is required by law to fork over copies of your medical records whenever you ask for them.”
Margalit, two questions. At what cost to the patient, and how would you find out where all your medical records are kept?
The law says “reasonable” cost and limits the consideration to materials, not time. The Brookings article has a range of prices that people encountered, ranging from practically nothing to pure excess. For comparison, the NHS in the UK, charges £10 each time patients want to view their records and up to £50 for a copy.
As to how would you know, if you know where you received care, then that’s where your records are, because medical facilities are required by law to maintain copies of medical records for several years (varies by State). You will not find out where all your records are, because they are not all in one place. Perhaps it would be more convenient if they were, but right now you need to get each piece from each medical facility, unless you are getting care from Kaiser or some other integrated system.