Physician Perspectives on Patient Data Access
Interesting discussions and perspectives on healthcare delivery continue in both the lay press and in medical publications. Review and commentary on recent discussions and perspectives are presented, with considerations for impact of technology, such as the release of patient data to the patient portal and resulting patient engagement and physician acceptance.
A recent New York Times1 article touched on many aspects of physician behavior and sociology, including cultural perspectives on respect (actually, on disrespect): “In a Culture of Disrespect, Patients Lose Out.” In the article, Danielle Ofri, MD, points out the problems of basic common courtesy. Her concerns were echoed in another article2 authored in part by Lucien Leape, MD, in which the authors assert “the fundamental cause of our slow progress is not lack of know-how or resources but a dysfunctional culture that resists change. Central to this culture is a physician ethos that favors individual privilege and autonomy—values that can lead to disrespectful behavior.”
Part of the cultural change that must occur, in addition to actually adopting evidence-guided care, is recognition of paternalistic behavior on the part of physicians in general that can be self-serving and inappropriate.
Physicians use paternalism to rationalize many things. Included in that is release of information to patients, whether withholding what the physician deems the patient is unable to comprehend, or will not respond favorably to. Autonomy of patients is a cornerstone of current medical philosophy, and evidenced by rights of refusal, advance directives, and right of access to their own data.
There may be legitimate or justifiable and selective reasons for paternalism, and “for various kinds of theoretical reasons. The broadest is simply consequentialist, i.e., more good than harm is produced. A narrower justification is that sometimes the individuals’ long-run autonomy is advanced by restricting his autonomy in the short-run. So, one might prevent people from taking mind-destroying drugs on the grounds that allowing them to do so destroys their autonomy and preventing them from doing so preserves it.”
A physician may choose to withhold medical information, treatments or medications to a patient, or information to a relative (their loved one’s death was instantaneous rather than the suffering that occurred).
We continue to hear why certain practices must continue—essentially, either because “we don’t want to change” or “we want to retain control”—rather than recognizing the current mentality and engagement paradigm is not sustainable, is not what a growing segment of patients demand and is not always in alignment of what is right for the patient.
Many physicians have a real fear of patients seeing information and not understanding it or incorrectly interpreting results. We do need to listen, understand and address this fear. We certainly would suggest the physician set an appropriate stage in advance of the results, discussing with the patient at the time of ordering the possible results and actions for the expected possibilities. We also can ask for actual data on how often a patient has received results in advance of them and resulted in actual harm, versus the “failure to diagnose/treat” risk, the primary malpractice category, representing 20 percent of overall suits in 2012.3
As we move more and more into needing patient engagement, and not just for meeting Meaningful Use metrics, getting relevant information that the patient wants to see, when they want to see it, is critical to keep patients aligned with physicians and facilities that indeed “give them what they want.”
• 61 percent of patients wanted access to their results “instantly or within several hours of it being done” – Mayo Clinic survey of 1,972 patients over a year ago4
• 61 percent of patients were very likely and 30 percent were somewhat likely to view test results prior to having discussions with physicians, according to the same survey
• Only 28 percent of patients reported that it was somewhat important and 35 percent very important for their physician or health provider to see results first (i.e., 37 percent don’t care if a physician sees the results first!)
• For pathology and radiology results, 48 percent preferred that the provider contact them with the results prior to being able to view them online; however, 35 percent wanted the results posted online, even if the results had not been reviewed and no matter what the results were.
Interestingly, the majority of the Mayo Clinic survey respondents were not the ages that one associates most as interested in immediate, on-line access: most (44 percent) were 50-64 years old, 22 percent were 65+, 29 percent were 30-49, and just 5 percent were aged 18-29 years. Thus, only one-third of survey participants are digital natives, one might anticipate an even greater preference in that group.
• Only 33 percent of physicians think patients should have full access to their data –Accenture survey5 from March 2013
• “Most physicians fall short of providing engagement tools for their patients” – Deloitte survey6 in 2013
• Physicians are being portrayed as out of date in the press and in blogs, such as by author Barbara Bronson Gray:7
“If you value your health as much as you care about reserving a table at a restaurant or buying a paperback online, you might be amazed and frustrated about how slowly physicians are figuring out how to harness the power of the internet.
While even some shoe repair shops have figured out how to email you when your boots are ready, and libraries let you put a hold on a book you want in seconds, making a simple appointment with most physicians requires a 10-minute phone call, including your time on hold.
If you'd like your lab results sent to you for review and personal record keeping, good luck.”
In a post Gray made last year8, from the patient perspective, some of her responses to common physician push-back were:
• “I wonder if more anxiety may be caused by results provided without an interpreter,” says Dr. Jones. To which I would say: We're grown ups. We deal with good and not-so-good information all the time. No one holds my hand when I see what happened to the stock market on a given day. In everyday life, no one is sitting at my desk to help me when I'm feeling a little bewildered or confused. And besides, if we ask to get the results directly, isn't that enough? Doesn't that mean we know ourselves well enough to believe we do better knowing the information than waiting on the sidelines for the phone to ring?
• “You won't understand.” To which I say, “Try me." If I don't understand, I won't freak out. I'll just do some research or ask you.
• “You'll take up too much time asking questions.” To which I say: it doesn't really take very long to explain what these things mean.
Clearly, there is a significant gap between what patients are expressly asking for and what most physicians want to provide. How long it takes to move the physician perceptions to align with what patient demands are is an unknown.
Given the slowness of acceptance and general receptivity to change our colleagues have historically demonstrated, there is concern that physicians are going to be left behind in the delivery of healthcare unless substantive changes do not occur soon.
Physician relevance may already be decreasing in care delivery, with availability of home tests for a number of diseases and conditions, coupled with increasing utilization of licensed independent practitioners and settings like MinuteClinic. Projected physician shortages may again apply pressure for alternate approaches to care.
There is no single solution that is right in all circumstances for anything in life. And, there is currently no national consensus on the approach to patient access or time delays for release of data.
It is time for physician attitudes to align with current times, times in which personal autonomy and responsibility for healthy behavior is becoming more prevalent, and the need to ensure engagement between physicians and patients remains strong and relevant.
As a friend and mentor tells me, “If you get too far in front of the troops, they can’t tell you from the enemy.” That said, though, it is important for physician leaders to be in front of their troops to help guide them towards where other thought leaders expect us to land delivering quality, safety and person-centered care in the future.
All opinions expressed are the authors and not necessarily those of his employer.
References:
1. plato.stanford.edu/entries/paternalism/
2. The Silent World of Doctor and Patient, 1984, Jay Katz
3. www.diederichhealthcare.com/medical-malpractice-insurance/2013-medical-malpractice-payout-analysis/
7. www.bodboss.com/2013/06/is-your-doctor-dinosaur.html
8. www.bodboss.com/2012/07/why-you-need-to-be-among-first-to-get.html