Why Digital Health Needs Standards And Health Informatics More Than Ever

 As we deal with the inevitable rise in the number of locations in which our health information is stored, we must redouble our efforts in the fields of health informatics and standards.  It is only via these foundations that we will be able to share health information within and across organisational boundaries, confident that we have a common view of meaning (to the extent that is possible) that does everything to minimise the risks of harm caused by misunderstood or misinterpreted health data.

 

As we start this new year, I’ve been reflecting on the potential role that Digital Health can play in disrupting health systems in positive ways…  I started by defining Digital Health in a recent post.

But Digital Health comes with a number of risks.  One of these risks is that the massive growth in “innovation”, particularly mobile health (mhealth) apps, results in further fragmentation of what is an already dangerously siloed world of health and medical information.

As I’ve discussed previously, one of the key ways to address this risk is by seeing mHealth for what it really is: an enabler (and the digital face) of new models of care, not just siloed mobile health apps.

In order to envisage a better (i.e. more transparent, safe, accessible, sustainable and efficient) health system than we have today, we must lift our vision above the siloed mobile health app as the building block of future improvement.  Seen correctly, mobile apps are the current delivery channel of choice for new, digitally-enabled models of care, but not the solution on their own.  The mobile app is only inherently a good thing in that it allows us to reach into the pocket of the health consumer, allowing the creation of a two-way digital channel.  Through this channel we can monitor patient behaviour, apply clinical decision support, interact with patients and their carers and seek to modify health behaviours.

But these benefits only come in to play when we connect patients, carers and clinicians in a complex, interconnected network.  Mobile is a necessary part of these emerging networks, but it is not sufficient.  Deliberate design is required to ensure that appropriate subsets of patient gathered data are made available to clinicians at the right time, in a way that does not make their job harder, overwhelm them, or lose the data signal amongst the noise.

Patient and carer engagement is a fantastic thing, but not if it encourages patients to become isolated from their care teams.  I really hope that we can start applying a more carefully considered approach to how we use mobile apps and devices, particularly in the development of exciting new, digitally-based models of care.

 

However, in addition to this more appropriate view of the role of mHealth, there is another key element to reducing the risks that flow from data fragmentation that needs to be mentioned.  As we deal with the inevitable rise in the number of locations in which our health information is stored, we must redouble our efforts in the fields of health informatics and standards.  It is only via these foundations that we will be able to share health information within and across organisational boundaries, confident that we have a common view of meaning (to the extent that is possible) that does everything to minimise the risks of harm caused by misunderstood or misinterpreted health data.

If you’re yet to be convinced about the importance of health informatics and standardised treatment of data, stop and consider the incidence of adverse drug events (ADEs) in Australia.  An ADE can result from the wrong drug, given to the wrong patient, in the wrong form, in the wrong dosage, or through an interaction with another drug that a patient is already taking.  Or any combination thereof.  Each year, there are an estimated 2 million ADEs in Australia, resulting in approximately 400,000 hospitalisations and an estimated 10,000-20,000 deaths.  Much of this would be preventable if we had better quality data in standardised forms, supporting a variety of interventions to prevent and reduce harm.

In the mad rush towards health “innovation”, I have a serious concern that many well-motivated, highly capable innovators don’t fully understand the life and death nature of information in healthcare.  There is a risk that formalised health informatics and health data standards feel like an unnecessary hindrance as we charge towards new approaches to healthcare delivery.  Unfortunately, however, this risks making the already difficult current situation even worse.

Don’t get me wrong, I understand that innovation likes to move at a great pace, and takes no prisoners.  But this an appeal to all those involved in developing new Digital Health and mHealth solutions:

  • Stop and consider the role and importance of standards.  Think about who you will need to exchange information with over time.  How can you be confident that you mean the same thing by each of your concepts?
  • Spend some time understanding the standards available from HL7 and IHE.   Of particular interest may be the emerging FHIR standard, designed for developers and particularly appropriate for mobile solution.
  • Build innovative Digital Health and mHealth solutions that don’t make our current health information problems worse.  Surely “first, do no harm” should apply to health informatics as well as healthcare delivery?

 

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