Why I won't be opting out of My Health Record

Over the last six months, I have frequently been asked by people who know about my involvement with eHealth whether I am opting out or staying in My Health Record.

To me, there is only one answer – of course I am staying in!  There may be limitations today – such as not enough health care providers participating, so not a lot of content, and concerns about data quality, but it is only by participating that we will see improvements in the quality of information and the real longer term value of the record in supporting health care. Over time, My Health Record will contain a summary overview of your health, hospital discharge summaries, diagnostic test results, medications and referral letters. It is only a summary of key information – it will not contain all your detailed clinical notes held by health services.

The health system is full of dedicated, smart people, working under immense and constant pressure.  They often have only a handful of the pieces of the jigsaw that make up your state of health to help them diagnose and treat you, and little time to go searching for the missing bits.  My Health Record may not deliver the completed puzzle to them, but over time it will fill in many of the missing pieces, or at the very least point them to a potential source for more information. 

As someone who has had a commitment to electronic health records for 20 years, and who has witnessed on so many occasions why they have such a huge potential benefit to the health system, the last few months of hearing from friends, colleagues and medical professionals that they have opted out of My Health Record have been intensely frustrating.  When I ask why they have made the decision to opt out, it is clear that many have made the choice on the basis of negative publicity rather than making an informed choice.  The reasons people give all boil down to a few common themes:

1.    I don’t want insurers/employers to get access to my health information

2.    I don’t trust the government to keep my data safe from misuse and theft

3.    I don’t have any health issues so there is no benefit to me

4.    I don’t have confidence that the information provided by other health care providers will be accurate

5.    It’s an invasion of my privacy to share my health information.

6.    There isn’t enough information available to make it worthwhile

7.    I don’t want my health information used for other purposes.

These are all valid concerns, BUT:

1.    Insurers/employers CANNOT legally access your record.  Their access is prohibited by legislation. You cannot be asked by an employer to provide access to your health record, and doctors performing pre-employment medical exams are not allowed to access your My Health Record.  Insurers cannot access your data for any purpose.

2.    Yes, there is always a chance that any system may be hacked.  Medical records stored electronically by hospitals, your GP or other health professionals are already exposed to this risk, as are any other systems in any other field that you interact with.  While there is a risk, with My Health Record there are many levels of security and security monitoring in place to prevent this from happening.  As an added benefit, you will know exactly who has looked at your record – something you cannot do with today’s patchwork of paper and electronic systems.

3.    You may not have health issues now, but the point of a longitudinal record is as much to support preventative health as it is to manage chronic or acute illness, by enabling doctors to identify changes between regular health checks, or to join the dots between visits to different providers to identify a potential problem before it becomes serious. 

4.    There is no denying that data quality is a big issue, and there may be times when information provided is not accurate. This is the case now, and clinicians currently have to balance between what other clinicians tell them, against their own observations.  Using My Health Record will still require those clinical judgements, but once it is more widely used it will help reduce the time it takes to gather information, and over time should help to drive sector wide data quality improvements.

5.    If there is information about your health history you really don’t want to share with health professionals, you don’t have to.  You can control what information you share, and who you share it with.  Everyone’s priorities are different, and there are types of health information that should rightly be very tightly restricted.  However, for myself, I am much more concerned about the vast amounts of information my bank holds about me, and the major disruption that a security breach in a banking system inflicts on me, than I am about my health information, which when shared between authorised clinicians can bring about real improvements to my health care. 

6.    This is a valid point. Currently there is limited information in the system. To be useful to clinicians, a My Health Record has to hold enough information to make it worthwhile to view.  However, we have to start somewhere.  In the near future the content may be limited, but with broader participation and use, the value will increase.

7.    If you don’t want your de-identified data used for purposes such as population health research, quality and safety initiatives, health service improvement and planning, policy development, you can opt out of its use for secondary use.  However, provided secondary use occurs within a robust and ethical governance framework, the potential of de-identified data to drive substantial improvements to our health care system and to population health is huge, and will ultimately benefit us all.

To me, the benefits of My Health Record to support my health care, maybe not today, but certainly in the years to come, far outweigh any risk.  I can see how it could have helped me and members of my family over the last decade:

  • Every time over the years that I was asked for details of my children’s medical history  (as a sleep deprived working mother, the finer details of which child had what vaccinations/illnesses etc and when and where these occurred became increasingly hard to recall, and beyond the first few months the paper Blue Book was never at hand when needed)

  • With a disabled family member whose very complex health needs filled many records that were never available when an emergency occurred, and where there were endless communication challenges between the large number of providers managing different conditions

  • For my mother where poor communication between multiple providers across public/private and district boundaries resulted in a diagnosis coming too late for the surgery that could have extended her life

  • For my father, who as dementia took hold, changed doctors on a weekly basis, but couldn’t remember who he had seen or what they said.  Every hospital visit was a nightmare as we tried to trace back who he might have seen and what medications he may have been on. 

There are huge potential benefits to health care from My Health Record, that will be increasingly realised by its wide use by both clinicians and health care consumers.  By having a My Health Record, your care will be better co-ordinated between the various professionals you see, clinicians will have better information for diagnosis and care planning, all healthcare providers will have access to key health information such as allergies and medications to reduce the risk of adverse events and medication errors, and there will be reduced duplication of diagnostic tests, reducing inconvenience, discomfort and cost. 

So, look at the controls that are in place, and have a look at what information is actually held on your record and think before you opt out – one day there is a chance My Health Record could save your life.

Joanna Kelly is the Health Practice lead at Doll Martin Associates. She has extensive experience in the health sector including as the former Director, Portfolio Management, Strategic Information Management for NSW Health , responsible for developing and driving the NSW Health ICT strategy.