This appeared on the Conversation a few days ago.
Why aren’t more people using the My Health Record?
March 24, 2017 2.49pm AEDT
My Health Records were a big government investment, but they’re just not being used.
Authors
- Bronwyn Hemsley Associate Professor in Speech Pathology, University of Newcastle
- Jacqueline Meredith Research Assistant, University of Newcastle
- Shaun McCarthy Director, University of Newcastle Legal Centre, University of Newcastle
The My Health Record is an online summary of personal health information that patients can share with health providers. As many as one in five Australians have a My Health Record.
But recent statistics show the My Health Record is only being used by a small percentage of consumers, and even then not to its fullest uses. So how can we get a greater return on the estimated A$1.2 billion taxpayer dollars invested in the system?
1. More health professionals need to add information
To date, approved health-care providers in the system have uploaded only about 1.7 million clinical documents, for the 4.6 million Australians who have a My Health Record. Just over one third of these clinical documents are Shared Health Summaries - listing health conditions, allergies, medications, and immunisations.
Information about health-care recipients is also added to the My Health Record from other sources – including Medicare and the Pharmaceutical Benefits Scheme, along with pharmacy medications information and hospital discharge summaries. Some health-care providers might be willing to share clinical documents, but hold concerns about privacy and may be unsure how sharing the information will improve patient care.
The shared health information in the My Health Record could help many patients recall vital health information. It could be particularly useful for those who struggle with medication management, have multiple health conditions, enter hospital frequently, or have multiple health providers.
The main purpose of the My Health Record is to improve the quality, safety and efficiency of patient care. Reducing medical errors related to the poor exchange of health information between patients and their health providers, or across multiple health providers, is a high priority.
We need more health information added into the system before it’s going to be useful for more people in supporting their health-care decisions. Patients prompting their GP or practice nurse to upload a Shared Health Summary at each visit could increase use of the system, which is designed to improve patient control over their health information.
2. We need to add more information ourselves
Many consumers with a My Health Record have only had one since June 2016 through a trial of “opt-out” sites. Lacking experience or guidance in using the My Health Record, they will not know what they can upload or why, or how to use the technology.
Currently, there are only about 80,000 “Consumer Entered Health Summaries” in the My Health Record. These summaries contain emergency contact details and very brief information on allergies and medications. There are also about 35,000 “Consumer Entered Health Notes” – similar to a health journal or diary.
Fewer than 900 people have uploaded a copy of their Advance Care Directive - a critically important document outlining a person’s wishes for future medical treatment - into the My Health Record. As it is the only national online repository for Advance Care Directives that can be accessed anywhere, more legal information websites need to prompt people to store their Advance Care Directive in the My Health Record.
Not knowing how to use computers, navigate the My Health Record, or save and upload documents will prevent many people from taking advantage of the system.
3. More people need to know how to use it
Currently, the My Health Record places high demands on reading and e-health literacy, making it difficult for many people to use. This could be a barrier for a large number of people.
People with low health literacy, people who lack engagement with digital health, people who lack access to a computer and the internet, and people with limited English literacy could struggle with these online records.
Information about the My Health Record needs to be inclusive, easier to read, and translated into many languages – and use pictures and videos – to enable everyone to use the system.
4. The people who need it most need support to use it
As many as one in five Australians have a disability. Anyone with a condition that affects their ability to explain their health history to others might need help to use the My Health Record. This includes people with dementia, stroke, traumatic brain injury, intellectual or developmental disability, autism spectrum disorder, motor neurone disease, Parkinson’s disease, and people with a wide range of social, physical, cognitive, or sensory impairments affecting communication.
People with communication difficulties have three times the risk of preventable harmful adverse events in hospital, relating to their problems communicating their needs to health providers. The My Health Record might be particularly helpful for this group, who are at risk of exclusion because of their communication impairments and low levels of digital inclusion.
While the My Health Record is set up for use by all Australians, people with communication difficulties and their families may need additional information, funding, and other supports to enable their participation. They might also need help to identify who would be their Nominated or Authorised Representative in the system.
Future enhancements of the My Health Record need to take into account the views and experiences of people with multiple health conditions who are engaging with the My Health Record. Gathering their stories of experience could lead to a greater understanding of the types of support needed for more people to use and benefit from this important e-health initiative.
You can find the original article here:
I pass this on in the hope we can start a conversation about what are the other problems with the myHR.
Comments welcome indeed hoped for!
David.
David is your comment function working?
ReplyDeleteA lot of privacy concerns along with clinical usability. Just to reinforce privacy this was announced this week
ReplyDeleteUS internet service providers will soon no longer need consent from users to share browsing history with marketers and other third parties.
On Tuesday the House of Representatives voted to repeal an Obama-era law that demanded ISPs have permission to share personal information - including location data.
Supporters of the move said it would increase competition, but critics said it would have a “chilling effect” on online privacy.
I have read the very many comments by readers in The Conversation to Bronwyn Hemsley's article (including comments by David More, Eric Browne and Victoria Wade). Bronwyn responded to each reader's comment. As I read her responses I couldn't help but feel that she genuinely believed the MyHR was functioning relatively well.
ReplyDeleteNo doubt she is a good speech pathologist. However, I found her responses to readers' comments to be lacking in objectivity and somewhat superficial reflecting an almost naive, unquestioning belief in the claims / promotional material about the MyMH available on the ADHA'S web site.
Perhaps she has not been privy to David More's aushealthit blogspot, or to the recently published articles:
1. “MY [ELECTRONIC] HEALTH RECORD” – CUI BONO (FOR WHOSE
BENEFIT)? By Danuta Mendelson and Gabrielle Wolf*
2. National electronic health record systems as `wicked projects': The Australian experience by Garrety, McLoughlin, Dalley and Wilson.
I commented on the authors' very first few words: "The My Health Record is an online summary of personal health information".
ReplyDeleteI explained that this statement is wrong, because the My Health Record is not a summary, but to date is really a repository of documents, most of which are uploaded to it automatically, especially Medicare claims and PBS dispensings. I explained that a person's My Health Record contains a Shared Health Summary only if a health professional has actually uploaded one. I explained that any Shared Health Summary present might be out of date, incomplete and/or inaccurate, and that it is possible for health professionals, who are now being forced to upload them, to upload summaries of poor quality.
There are many comments from others on the The Conversation Website.
Although not a truly balanced discussion of the merits of the myHR, the original article raises some good points why the myHR should be used from a consumer point of view. The point about one about Advance Care Directive was particularly well made I think. It also mentioned the low usage and reasons for the low opt-out rates which were not inconsistent with my own view.
ReplyDeleteAs a conversation starter it was fine.
However, it misses the elephant in the room. It does mention the limited information present on the system. It doesn't really talk about the patient safety issues associated with incomplete or missing information. Further, it totally overlooks the workflow issues for GPs and other clinicians who don't have the time to wade through potentially piles of low value information to pick up the odd nugget of information of some value.
For some balance, strong arguments for not using the myHR are given here: http://bit.ly/2mYt7F4
As the original article was focussed on the consumer view I am willing to forgive its shortcomings a little. I give it a C-.
I get the impression reading through the comments and replies there is more to this, feels like a paid research undertaking, which I am fine with, but if it is and is being funding through some government grant directly or otherwise they should state this.
ReplyDeleteInteresting all the same.