In healthcare, which is more important privacy or safety? Are they mutually exclusive? In the leaps that we have made in cybersecurity in healthcare, can’t we have both? The main argument I hear against a National Health Record is people’s fear of a data breach. Contrary to that popular belief, one study, related to sharing data for clinical trials, reported that “less than a third are concerned that their data might be stolen or used for marketing purposes.” The article goes so far as to say that HIPAA and inconsistency of state and federal data sharing regulations are the main prohibitors to sharing data for research purposes. In my opinion, the same holds true for a National Health Record.
My interest and enthusiasm for a National Health Record started when my father was diagnosed with Frontal Lobe Dementia. Long before my sisters and I knew that his health was in peril, he was diligent about seeing his Primary Care Physician (PCP) for any and all ailments. As a creature of habit, he even carried an index card with his medications listed on it. As time went on, his brain deteriorated and he was given the diagnosis of Frontal Lobe Dementia. Naturally, his medical needs grew in complexity. Lacking access to any other information about his healthcare, I was thankful that we had that index card. After my sister was granted Healthcare Proxy, we found the card was outdated and offered little assistance as we started to manage a 68-year old’s elaborate medical care.
My dad (and my sisters and I) could have benefited immensely from having access to his medications, labs, diagnoses, procedures, as well as all of his doctors, hospital and emergency room visit data. I cannot imagine how his care would have been improved if we could also share that information with any provider treating him.
In my opinion, my father’s case showcases the value of having a National Health Record, which is rooted in four major factors. In this blog, I will cover the first three:
- Comprehensive Information
- Patients as Consumers
- Caring for our Vulnerable Populations
In my next blog in September 2019, I will cover:
- Patient Safety
Comprehensive Information: Physicians Providing Best Care and Advice
The bottom line is: more information equals better decisions, in any situation. Providers struggle with the current segmented, “unmanaged” care system, and patients are overburdened and stressed having to know what is relevant to their current medical needs and remembering to share all of the pertinent details with each provider.
In our current fee-for-service healthcare model, physicians are not able to or incentivized to provide “the best care”. I have asked my own practitioners about their challenges. They have equated it to a “garage sale jigsaw puzzle”. They have to rely on the patient to describe the finished picture, but they are lacking the physical pieces to complete that puzzle. Given the time-constraints and pressures that physician groups face on a daily basis, they are rarely able to get that comprehensive picture and/or follow up with the patient’s other providers.
Ironically, they often will refer the patient to a specialist when, with a little more data at their fingertips, the patient could have been treated by them. A National Health Record could allow practitioners to care for their patients in the current visit or limit the number of referrals and follow ups. A reduced number of follow ups could also give the practitioner more time with each patient, subsequently improving each patient’s experience and health.
Patients as Consumers: Member-Driven Healthcare
With the prevalence of high-dollar deductible health plans, members have to assume the role of consumer as well as patient. This can be overwhelming for most people. We need information, education and tools to manage our healthcare options, costs and coordination of communication. A National Health Record would allow members to be able to collect, view and selectively share data with whoever they want.
We have also moved to a culture of choice, which leads to our information being stored at every provider we have seen. That information is helpful to each practitioner; it would be exponentially useful if each had a comprehensive view of all of it.
Caring for our Vulnerable Populations
The most vulnerable patients with complex medical situations utilize healthcare at the highest rate. Critically-ill patients and our elderly will find themselves seeing a variety of specialists in addition to a PCP. And they tend to have multiple, potentially conflicting, medical concerns.
Given the complexity of patients in critical care situations, they are likely to not be able to report thorough medical histories and provide accurate prescription lists. They are likely to be under considerable stress, have financial worries, are trying to balance their medical needs with some semblance of a “normal” life. Many times they are also taking medications that alters their ability to think clearly, concentrate or communicate.
At a time when people are living longer due to medical and health-related discoveries, we are also bound by the complications caused by the same advances. People are living longer, but the human body and mind still has the same biology. As we age, we deteriorate, and our healthcare needs become more frequent, complicated and dispersed. As our minds age, we couple the need for medical attention with the decrease in the ability to remember the pertinent details of our health.
Someone could be coordinating these patients’ care through case management or under a managed-care physician practice. But in a time when healthcare providers are typically over-scheduled and under-staffed, it is not likely that they could achieve the level of thoroughness that a National Health Record could provide. It would alleviate the stress of a patient having to know and communicate “everything”, and would give providers a more comprehensive picture to use when treating their patients.
Better Than an Index Card
As I contemplate what I can do to further the fight for a National Health Record, I wish I had kept my Dad’s index card. It reminds me that there are simple ways to empower patients, as well as showing there is a lot of room for improvement for engaging them using technology. Although there are many competing ideas and interests in the debate around a National Health Record, I think the value of a comprehensive, sharable medical record far outweighs any perceived risks and concerns.