I am a big fan of DIY (do-it-yourself) healthcare, at least for the bulk of relatively minor issues that plague people. I think the days when doctors were needed to control, interpret and dole out health data and information are waning. There are simply too many ways, primarily via the internet, to get good, reliable, easy-to-understand information about our own health.
The Quantified Self (QS) people who use sensors, mobile apps, and other devices to collect data on themselves may be taking it to what some would consider extreme, but I think it is the wave of the future.
Now, no one would question who “owns” the data collected in this manner, but how about data collected via a medical laboratory? Is that somehow different and something we, the patients, should not be allowed direct access to lest we harm ourselves by misinterpretation. Interesting question!
Direct access for patients
The issue is explored in a commentary in the December 14, 2011 issue of the Journal of the American Medical Association (JAMA). Traber Davis Giardina, MA, MSW and Hardeep Singh MD, MPH, ask the question: “Should Patients Get Direct Access to their Laboratory Test Results?” They find that it is “An Answer with Many Questions.”
The reason to raise this question now is that there is a proposed rule by the Department of Health and Human Services in conjunction with the Centers for Medicare and Medicaid Services, the Centers for Disease Control and Prevention and the Office for Civil Rights, that would allow individuals the ability to access their test results directly from the laboratory by written or electronic request. The rule does not specify a waiting period to allow physicians to review the results and contact the patient first. It would not apply in states and territories where such a practice is banned outright. This is a big step in the move to true “patient-centeredness”…and is likely to be very controversial, particularly in the physician community.
Reasons in favor of direct access
There are a number of reasons why direct access is a good idea:
- Between 8% and 26% of abnormal test results, including those suspicious for cancer, are not followed up in a timely manner. Direct access could help reduce the number of times this occurs.
- Self-management, particularly of chronic illness has known benefits. Just like the QS people, many folks with chronic illness obtain and manage to self-acquired lab results every day via glucometers, home pulmonary function tests, blood pressure measurements and so forth. Direct access to laboratory-acquired data, one could argue, is a continuation of that personal responsibility.
- Patients want to be notified about their results in what they perceive as a timely fashion. In one study, patients who received direct notification of their bone density tests results were more likely to perceive they had timely notification compared to usual care even though there was no measurable effect on actual treatment received after three months.
- Being more responsible for test results could encourage consumers to try to learn more about the meaning of the test results, conceivably increasing their health literacy. Can you imagine a day when part of health courses taught in elementary, high school, and college, meant acquiring a basic understanding of what abnormal liver function tests, high glucose, or low potassium actually meant? Now that would be an interesting change.
- Finally, and I quote from the Giardina and Singh article: “Unencumbered access to health information may lead to better informed and engaged patients who could then partner with their physicians to achieve true patient-centered care and better outcomes.”
Reasons against direct access
The arguments against direct access discussed by Giardina and Singh include the following:
- Studies show that patients prefer their physicians contact them directly when they have abnormal test results, although the studies, published in 2005 and 2009, preceded the extraordinary use of the internet to access health information that exists today.
- There is concern over whether patients will know what to do when they receive the results—will they make erroneous interpretations or fail to contact their doctors? This could be, but the intent of the proposed rule is shared access to the results. I suspect if the rule becomes law, doctors will develop better notification mechanisms so that they reach the patient before the patient directly accesses the results or lab companies will design better lab test notifications with easy-to-understand interpretations or a whole new industry will appear that can provide instantly available individualized lab interpretation…or maybe all three of these would happen and that would be a very good thing
- Unknown impact of dual notification (doctors and patients) of lab test results on physician behavior…would doctors simply shift responsibility for initiating follow-up care from themselves to their patients?
- Would direct access of life-changing lab tests, such as HIV or malignancy, lead to unnecessary patient anxiety—or worse? [Conversely, is there less anxiety, desperation, or suicidal ideation if the bad news is delivered face to face? As I discussed in an earlier post, not all doctors deliver bad news in a sensitive and caring manner.]
- Individuals likely may contact their physicians immediately after getting the lab results asking for a telephonic or face-to-face interpretation…it is not known how this would impact physician workload and/or potential for reimbursement. [I tend to minimize this as it is a physician-centric issue that patient-centric practices are going to have to deal with if we are to transform the current approach to patient care.]
In the end…
Because there are more questions than answers about the risks and benefits of direct access to lab results, I think we will see a passionate debate about the proposed rule. In the absence of evidence, we should be prepared for self-interest and strongly held beliefs to dominate the discussion on both sides of the issue. It will definitely be interesting.