Wednesday, June 08, 2016

The UK Finds That Personal Health Records Are Pretty Much Useless. What A Surprise!

This appeared last week:

PHRs struggling to gain traction and show benefits - review

Ben Heather
2 June 2016
Attempts to create a personal health records suffer from a “lack of quantifiable benefits” and some schemes face an uncertain future if new funding is not found.
A wide ranging review of PHRs, carried out by the Royal College of Physicians’ Health Informatics Unit and funded by NHS England, found that attempts to put more health information in the hands of patients remain at a “relatively low level of maturity.”
It also found that while organisations that had set up PHR projects claimed they had led to meaningful improvements - from fewer hospitalisations to cost savings – these were mostly “assumptions or anecdotal.”
“Many of the case study sites had invested in PHRs on the basis that they are ‘a good thing’, but with little evidence of quantified benefits,” a report released this week says. “The lack of a viable business case could slow further developments and make existing PHRs unsustainable.”
Professor Jeremy Wyatt, who leads the Health Informatics Unit, said there was a clear desire from the public to get more involved in managing their health; but not yet the capacity for providers to deliver.
“Personal health records are a tool that can facilitate this, but at present are only available to restricted groups of patients,” he said. “The evidence shows that more work is required to develop and improve the user experience.”
The report defines personal health records as “a digital tool that helps people to maintain their health and manage their care”; most often by enabling them to access their health record, carry out transactional services, and communicate with medical staff.
Rolling out PHRs across the country is part of the National Information Board’s ‘Personalised Health and Care 2020’ framework to drive improved use of digital technology in healthcare; and some large acute and mental health trusts have invested in developing them.
Lots more here:
Here is the link to the report:
Here are the summary recommendations:

Key recommendations

  • There is little information available on the usage of PHRs in the UK, but it appears that the number of both individual users and organisational users is low.
  • Although it seems self-evident that patients and service users should have access to their electronic records, how they can do that is currently unclear, as are what data they want to see or which functions they are able to carry out using their PHR.
  • At best, there is only anecdotal information on PHR benefits, with little concrete evidence, and funding tends to be short term.
  • Where a PHR is used, it tends to be for a very specific purpose with a very specific user base.
  • Commonly identified success factors in the adoption of PHRs were: health/care professionals encouraging patients; good communications through multiple channels; support for users at the start (e.g. demonstrating use of PHR).
  • It is vital that patients and health/social care professionals are active participants in the design, implementation and appraisal of PHRs.
  • The implementation of PHRs has tended to focus on enhancing information sharing and communication. The failure to fully utilise PHRs for health service improvement projects may mean that potential improvements in cost-efficiency and effectiveness are not being realised.
  • Further research should seek to understand what patients require from PHRs, along with exploring and piloting projects that utilise the features available within a PHR to deliver health or social care in innovative ways.
  • With the anticipated greater use, functionality and complexity of PHRs, sufficient attention must be paid to the design and user interface of these systems to ensure ease of use by, and benefits for, all sectors of the community.
-----  End Summary.
There is little reason to think that things are any different in Australia and this all goes to show just how evidence free the PCEHR / myHR is!
David.

7 comments:

Terry Hannan said...

Right on the button David. As Paul Biondich and Burke Mamlin documented in their paper of the core elements for successful eHealth implementations, "CLINICALLY USEFUL: feedback to providers and caregivers is critical. If the system is NOT CLINICALLY USEFUL it will not be used".
Mamlin BW, Biondich PG, Wolfe BA, Fraser H, Jazayeri D, Allen C, et al. Cooking up an open source EMR for developing countries: OpenMRS - a recipe for successful collaboration. AMIA Annu Symp Proc. 2006:529-33. Epub 2007/01/24.

Dr Ian Colclough said...

I presume we can accept that there are plenty of CLINICALLY USEFUL systems available in the marketplace today; Medical Director, ZedMed, Sonic Health, Pro Medicus, HealthLink, Genie, and many more. However, in extending use of the term CLINICALLY USEFUL - the elusive issue is and continues to be that CLINICALLY USEFUL systems must be underpinned by interoperability, the seamless exchange of information and sharing of read-write access to information by multiple, authorised users.

In that context a CLINICALLY USEFUL system needs to be more than just 'clinically useful'. It must also be ORGANISATIONALLY and ADMINISTRATIVELY useful and seamlessly embedded as a routine part of the infrastructure; so as to holistically support the 'work' of the organisation and its many disparate cultures and users, clinicians, managers, and others.

With this in mind it is not surprising that the traditional approaches adopted in the UK to the introduction of Personal Health Records, and in Australia to the introduction of My Health Record have encountered major resistance from their target audiences; rendering them unsustainable.

The lack of quantifiable benefits and lack of viable business cases should by now have have given a clear indication that the approaches used and the reasoning behind such approaches could, might possibly, be wrong. Failure to explore this hypothesis will perpetuate the status quo.

Bernard Robertson-Dunn said...

Ian,

If by "traditional approaches" you mean - treat health data as an IT database problem you are completely correct, IMHO.

If by "Clinically Useful", you mean it has value to the health care professional you are completely correct, IMHO.

In fact, I'd go as far as to say - you are completely correct in all you've said, IMHO.

The big test of the MyHR is not the opt-out rate of the trials (rumoured to be about 2%), the number of registrations, the number of uploads or even the number of downloads.

It should be the demonstrated reduction of health care costs combined with the value of the system to those health care professionals who had used the data in the system as part of their health care practices.

Dr Ian Colclough said...

Bernard you said (June 09, 2016 4:53 PM) “It should be the demonstrated reduction of health care costs combined with the value of the system to those health care professionals who had used the data in the system as part of their health care practices.”

That is a perfectly valid position to adopt Bernard. It seems however that over the last decade this has been far too difficult a concept for NEHTA and the Department to embrace and comprehend. From time to time, where there has been some limited semblance of comprehension, the essence and focus of this very basic (but far from simple) concept has very quickly become lost in the forest of confused messages, uncontrolled hubris, and limited understandings by the bureaucracy of the fundamentals of the essential eHealth strategies required to achieve significant advances; step by step.

For that reason, some eHealth experts are now quietly contributing knowledge and resources towards the development of My Personal Health Record® [My PHR®] in order to give the patient (consumer) another option for recording their personal and clinical health care information. The decision to Opt-in to My PHR® will be a completely voluntary decision by the patient (consumer) in collaboration with their health care provider and at the individual’s request. There will be no coercion to participate and no incentives to force artificial change among health providers. Free market forces will prevail. The Department’s My Health Record may be a form of benchmark for comparison; thereby giving patients the right to make an informed choice and most importantly the freedom to choose.

Trevor3130 said...

My recent day procedure in a private hospital threw a bit of light on health information management. I submitted my details on-line a few days prior, all the same data that would be on my GP's system and (presumably) on the surgeon's system. No questions about MyPHR. Then I got a phone call from the admin staff to go over my entries and confirm them. On the day, I was asked to confirm the basics by at least three more people. They all asked about Allergies. I reckon if I'd had a label "NO allergies" plastered to my forehead I'd still have been asked. These interviews were each adding to the pile of paperwork. I wondered how much any of it found it's way into a searchable electronic record.
All up a pretty slick operation with large management overheads. I hope some of the $400 up-front excess goes to auditing their processes to make them more efficient and to eliminate the redundancies. Maybe their over-cautiousness in some of the details are based on actual experience. I cannot see how electronic storage and retrieval of given information could make much difference.

Andrew McIntyre said...

You may be surprised to know that what they were doing is mandated by authorities that as part of accreditation force these workflows onto day surgeries. The repetitive questions and multiple handovers are mandated even though they are often counterproductive in small efficient environments. Its part of the bureaucratization of health in the name of "safety" and in my clinical experience in counterproductive as it turns nursing staff into tickers of boxes rather than professionals who evaluate patients based on knowledge and experience. If the box was ticked it happened and they are in the clear, if the box was not ticked it didn't happen is the legal interpretation...

Its part of the effort to reduce error, but I strongly suspect it ties clinical staff up in paperwork which then allows error to happen. I used to read nursing notes but they now have 8 pages of tick boxes and no human summary. The falls risk assessment is often 2 pages and its hard to find any useful purpose when every patient who has been sedated is a falls risk!!!

Anonymous said...

Re- June 10, 2016 4:37 PM … What a breath of fresh air - “… no coercion to participate …. no incentives to force artificial change among health providers. Free market forces will prevail. ….. patients (will have) the right to make an informed choice and ….... the freedom to choose.”

These are very important issues and they make a lot of sense. If My Personal Health Record can help me and my doctors better manage my health I will voluntarily make the choice to enrol and I will be more than happy to pay a modest annual subscription for doing so. Bring it on.