EHR and Portals, what might the future offer?
WIFM — What’s in it for me?
“The right information at the right time” is one of the catch cries in common use these days and forms part of the fundamental principles for the development of a National Electronic Health Record (NEHR) Irrespective of geographical location, whether in New Zealand or overseas. It is well recognised that our current model of care is unsustainable and needs to change, and the National EHR is one of the foundation blocks that should underpin this change.
At the core of this revised model of care is the principle that it should be about the patient, and the patient should be actively engaged in their healthcare and empowered to take action. There are discussions around continuity of care, care plans, multidisciplinary teams, to name but a few, all of which contribute to an improved model of care — and all of which have been implemented, in New Zealand and internationally, in one way or another. However, in many of these cases they are point solutions and restricted to specific regions or trials.
So, coming back to the point, WIFM? Ignoring the healthcare professionals, what does the future hold for you, and your health record, as you make your journey through the health system over the coming years?
Let’s start with just your Primary Care record. This is the one held by your doctor and is probably the richest source of data regarding your medical history. I won’t get into the debate regarding just which parts of that record could, or should, be shared, but essentially, if this record was made available as part of your EHR then suddenly you can realistically expect that when you visit another clinic or facility they should have access to the same information your doctor has about your health. So, lab and scan results are available, recent prescriptions and consult notes become available and the clinician treating you can offer informed medical advice. In so many cases people are often surprised that this does not already happen. Naturally this also depends on your having granted permissions for them to do so.
Let’s add into this your Secondary Care records. In New Zealand these are those retained by the hospitals and DHB’s regarding any interaction you might have had in any hospital around the country. If you were born in a New Zealand hospital, this would be the occasion when you are issued with your unique National Health Identifier (NHI) which is used across the sector to identify you across the various health systems. These records add a further layer of richness to your EHR. Now details of any hospital admissions and treatments become available, including medications taken during your hospital stay, treatments and procedures, and also your discharge plan. In other words, what treatment plan should have been followed once you have left the hospital.
Just with these two datasets this Health Record now has immense value to you, and your various health professionals as you traverse the system. It can now realistically provide the basis for a care team to collaborate on the correct plans for you. Current practice is predominantly “ambulance at the bottom of the cliff” however once the shared record is available to the entire care team involved in your health and well-being, you can now explore wellness and preventive medicine. This is where the changed model of care starts to kick in. It is significantly cheaper to catch people before they get ill and take action, than it is after the event.
Add to this growing record the Community Care details, for example pharmacy to show medications compliance. Ie. Did you actually go and get your prescription filled? Then there are the Allied Health records and datasets that can further contribute to this growing picture of your health. These could include physio, dental, and so on. Each dataset, as it is added, improving the richness of the data, and hopefully the quality of care you can expect to receive.
Understanding genome string data
One of the final datasets to be added will likely be your full genome string, although due to cost and other constraints this is likely to be some way off. It is also the one issue that causes massive anxiety due to the potential for misuse.
Putting the more controversial uses to one side for now, the inclusion of this dataset into your record, shared or otherwise, offers incredible potential. Suddenly targeted healthcare becomes a possibility. The flow on effect of this is enormous. Understanding, for example, whether a woman has the gene that makes her susceptible to breast cancer, means only those women at risk need to be screened frequently. Those women where the risk is low will no longer need regular invasive scans. This can apply to diabetes, heart failure, obesity — the list goes on. Also, by recognising a person predisposition to these conditions, preventive care can immediately reduce the likelihood of the condition developing, and might be dietary based, not through medications.
The more sinister use of this data would be for business to use this same information to deny insurance, employment and so on. Care needs to be taken to ensure this is not the case. America has already introduced a non-discrimination law for exactly this purpose.
In order to close this loop, the subject of access once again needs to be raised. Not with respect to permissions, but rather how it will be accessed. There is no single correct answer to this. In some instances, the clinical systems will integrate in some fashion with the national system. For example, the web services access by the Practice Management Systems to the NZ Patient Enrolments Service. The integration is seamless and the end user is not required to take any action to access the data.
Other instances could require a portal of some description. Again there are numerous portals types and capabilities depending on your status as a patient or a practitioner. As a patient though, what should this portal do for me?
How can portals help?
The New Zealand Health Strategy targeted portals as an essential requirement for all clinics/practices and there has been significant adoption in recent years. In the main, these only access the records associated with the practice at which you are enrolled, and although often interpreted as a Shared Electronic Record this is not quite the case. In some instances, these do offer limited sharing capability within closed groups or regions, but they are not yet available nationally.
Of more use to you as the patient though, is immediate access to your own recent records and the ability to interact with your GP. Depending on the portal selected by the practice you are now able to check recent lab results, order new prescriptions, contact the practice nurse for general health queries and even book appointments directly.
There is also the opportunity for you as a patient to enter your own observed health data to be maintained in your file. This could be blood sugar levels, blood pressure, fitness records, entered manually of from the plethora of wearables and devices available to you today, or in development, to monitor your health and wellbeing.
As yet the strategy for inclusion of these patient maintained records into the National Service has not been debated and will no doubt generate significant interest.
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