The recent ADHA Strategy failed to ask two fundamental questions:
1. What is My Health Record (MyHR) and does it have value?
1. What is My Health Record (MyHR) and does it have value?
2. What should or could it be?
The answer to the first question has its roots in the genesis of health records – notes by doctors and hospital staff regarding a patient’s treatment. A better term would be Medical Records. MyHR is simply an incomplete summary of a patient’s medical treatment. What destroys its potential, but very limited, usefulness is that a patient is critically involved in summary data getting into the system, can impose controls over some of the documents (not the Shared and Personal Health Summaries) and can prevent specific health care institutions from accessing the record. These make it, as the government’s own website says, unreliable.
Looking at the second question, and assuming any health record system should be more than just a medical treatment record, we can ask: What information is useful in determining and managing a person’s health?
This article provides a good starting point: “The Future of Primary Care and our Healthcare System. New Yorker January 2017
“Our ability to use information to understand and reshape the future is accelerating in multiple ways. We have at least four kinds of information that matter to your health and well-being over time: information about the state of your internal systems (from your imaging and lab-test results, your genome sequencing); the state of your living conditions (your housing, community, economic, and environmental circumstances); the state of the care you receive (what your practitioners have done and how well they did it, what medications and other treatments they have provided); and the state of your behaviours (your patterns of sleep, exercise, stress, eating, sexual activity, adherence to treatments). The potential of this information is so enormous it is almost scary.”
http://www.newyorker.com/magazine/2017/01/23/the-heroism-of-incremental-care
http://www.newyorker.com/magazine/2017/01/23/the-heroism-of-incremental-care
If we take the first category - the state of your internal systems – what are some basic indicators regarding your health. Here are a few:
• Weight
• Height
• Waist circumference
• Body Type
• Cholesterol levels
• Sugar levels
• Cardiovascular parameters, e.g. blood pressure, pulse rate, JVP
• Is the patient a smoker, a drinker, a recreational drug user?
• Key details of family history
Even more useful would be a structured history showing trends i.e. some of the above characteristics for the previous six months, one year, two years. If you are a pregnant woman, some of these data change almost daily.
Does your MyHR contain any of these characteristics? Almost certainly not, that’s because MyHR is predicated on events – i.e. medical treatment - not health. There’s no place for these basic indicators or data on your living conditions and behaviours; factors that are critical for assessing and managing health.
MyHR is useless when it comes to health management because it can contain far too much medical treatment data and not enough health data. This is probably why it hasn’t been broadly accepted by either the medical community or patients; it is of little or no value to either group.
A further, but essential question is this: Where could a patient’s health data come from? In reality, it can only come from the patient. Is this realistic? This is the biggest single problem with any health record system. Humans being what they are, it is highly unlikely that most will bother. If you are aged, unfamiliar with technology or ill, it is even less likely.
If ADHA thinks that, when they start publicising the opt-out program and claim that “My Health Record is a secure online summary of your health information”, nobody is going to point out that it doesn’t even contain basic, up to date health data, then they will be sadly disappointed.
What’s the alternative? I believe there are, or will be, three areas where gains/advances can be achieved:
1. Enhance medical treatment systems as used by hospitals, GPs and specialists. These systems are essential for good health care but should not be considered “health records”. Improvements involve solving the interoperability and secure messaging problems but by considering them as medical data problems not technology problems. It also requires better understanding, interpretation and management of the data in these systems. By all means permit patients who are interested to access selected areas of such systems, but don’t expect too much from this. Keep it simple and keep it cheap.
2. Take advantage of advances in medical data acquisition systems. For example, when the patient presents at a healthcare facility with a health problem, they are subject to a range of basic tests and measurements at that time. Specialist measurements, dependent on their current medical problems can follow. These data will be accurate and up-to-date and as more medical technology is developed they will become cheaper, quicker and more complete. Historical data from medical treatment systems will help but is probably not essential. The future will be more and better medical data - when needed. Old medical data should be treated as potentially dangerous and toxic – the patient has probably changed.
3. Treat national or population health as a systemic and social problem, not that of individuals. Getting people to take more responsibility for their health will not be achieved by showing them their treatment records or getting them to populate true health information systems.
The future will be about truly innovative ways of improving health care, not by propping up old antiquated methods full of problems. MyHR is a relic of past thinking. ADHA thinks that it has lessons to teach other countries. They don’t. The problem ADHA has is that the rest of the world is so far ahead of Australia that the gap between us and them looks to ADHA like green field opportunities whereas, in fact, it’s just a dry, dusty, barren desert.
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Comments welcome!
David.
An excellent contribution Bernard, and David thank you for providing an open platform for these views to be accommodated and encouraged.
ReplyDeleteBernard, an excellent contribution!
ReplyDeleteI would add two elements to your list of areas of opportunity and challenges for advancement.
The first concerns the nature of human relationships between and among professional groups which is really about breaking down the silos so that information can flow as required to support appropriate care delivery action(s).
The second concerns the nature of organized purposeful collaboration to address the 'whole-of-health' system and sector perspectives. The challenge here is two-fold: a) to identify the areas of mutuality; and b) to identify how we go about achieving a revolution in the quality of collaboration. At the very least we have public/private, geographic, and jurisdictional boundaries to address and this is before we tackle the human physical sphere of health connecting with the digital sphere.
Huge opportunity for all BUT absolutely no guarantee that we will succeed.