MHR and bridging the digital divide
We find ourselves right now at a pivotal point in the development of Australia’s most important digital health project: The My Health Record.
The move of the MHR program towards the “opt out” deadline next week has focused critical scrutiny on issues of access, security and privacy to, and of, personal health information.
I won’t rehearse the pros and cons of these arguments here but would like to examine the subject of digital health from the standpoints of two competing perspectives.
Those perspectives are, would you believe, digital and health.
One of the features of the current discussion is that the two dominant sometimes opposing groups in the MHR debate can be somewhat generally, but not always, defined by the digital side coming from an expertise and familiarity with the technology, while the other tends to hail from the health sector, clinicians and administrators.
The digital experts appear more likely to voice deeper concern about the frailties of the MHR, its technical vulnerabilities when it comes to privacy and security.
The health professionals and advocates who have had some experience with the healthcare side of MHR tend, but not always, to express optimism about its potential to improve health care.
And then there is the much larger mass of ordinary citizens in the middle who find the whole issue daunting.
I come very much from the health perspective. MHR is ultimately about people, an enabler to their health care, a tool for more effective and efficient care.
The challenges of MHR are about people. The technical challenges are significant but should be seen set against the great benefits and advances MHR enables.
And the most important challenges are more to do with people than technology.
To realise the MHR’s full potential we must deal with the attitudes and behaviours of consumers and clinicians - to overcome the ignorance and suspicion present in the digital divide and to promote uptake and meaningful use.
We must find incentives to spur doctors to take up MHR and consumers to embrace change.
We must acknowledge that we are all human with differing needs and abililties to challenge assumptions when in fact many of us do not fit the stereotype. There are teenage luddites and elderly hackers in contemporary society.
And that means consumers and clinicians engaging to develop trust, transparency and power sharing.
Most importantly, it means giving consumers the 3As: access, agency and activation. That’s consistent with contemporary thinking on consumer-directed care.
Among the challenges we are trying to resolve are those associated with disconnected care that can be reconnected with MHR and the sometimes yawning information asymmetry that exists between consumers and providers that can be overcome with a single ‘drop box’ for key health information.
We know that when patients are treated as partners in their care and decisions are taken jointly about treatment plans based on equal information, better health outcomes and experiences of care follow.
The important thing is for there to be the right information, available to the right people at the right time. Many people, including the most respected of medical specialists, remain happy to rely on printed information, but a shared e-record is easy, convenient, efficient and enables sharing.
The current debate over MHR safeguards underlines just how important it is for major new initiatives of scale to be backed by a ‘social licence’ and for safety and privacy to be strongly protected to ensure the literacy, trust and confidence needed to make MHR routine.
A central element of a successful MHR will be patient activation: something that has not been given enough attention. A disengaged patient is unlikely to embrace and reap the benefits of MHR in the same way as a patient who is motivated to take action to better self-manage and exercise choice and control over their own healthcare.
As I mentioned earlier, we need to accept and work with the reality that all patients are different. It is at the time of “healthcare moments” when consumers are with their clinician discussing their needs that individuals are most likely to embrace the benefits of MHR and digital health apps.
Our recent survey on health apps showed that people’s confidence in their GP’s advice about safety and quality is key.
Once activated, consumers need to trust that both the health records and other health information they need is at their fingertips. We need to make this easy for people and take a user experience approach to work at reducing the barriers to usable health records.
Too often we hear from consumers who support MHR only to find there is little usable information on their record. Too often we hear that they’ve nowhere to go for advice and support in between trips to the doctor once they’ve got a care plan. Digital solutions can help if MHR use is encouraged and taught and apps and online peer networks promoted.
Consumers do want ownership and control of their health data – our research has told us that overwhelmingly. They are concerned to ensure that their personal data is not used to expose them to stigma and detriment.
This same research told us that consumers realise the great public good that comes from research using de-identified health data. They ask to informed about how their data will be used, to give consent, to be assured that protections are in place and that commercial use is outruled.
So at a time when trust in institutions and data security is under challenge, it becomes more important than ever that we ensure rigour and integrity as central to MHR’s success.
Trust is slow to build but easy to erode. MHR offers the opportunity to demonstrate that we do have the capacity and ambition to embed the advances of electronic information into health care for the benefit of all.
In other words to bridge the digital divide.