This appeared a few days ago in the British Medical Journal.
Patient access to health records: striving for the Swedish ideal
BMJ 2017; 357 doi: https://doi.org/10.1136/bmj.j2069 (Published 02 May 2017) Cite this as: BMJ 2017;357:j2069
- Stephen Armstrong, freelance journalist, London, UK
All patients in Sweden will shortly have access to their full medical records. Stephen Armstrong reports on the the country’s 20 year struggle to achieve this and what the UK can learn
This spring Stockholm, the last of Sweden’s 22 counties to implement patient accessible electronic health records, is rolling out the country’s Journalen patient portal service.1 The portal is part of the national e-health strategy, which states that “all residents from 16 years should by 2020 have access to all information documented in county funded health and dental care.2
Sweden is leading the way in offering all patients universal access to medical records—all its hospitals, primary care centres, and psychiatric facilities already use electronic health records. The figure in Europe is 65% overall and 81% in hospitals.3 By February 2017, 3 773 178 Swedes, or 37.9% of the population, had set up accounts.
Patients can log in to the Journalen system using either an electronic identifier or their Swedish personal identity number.1 They are able to see notes from all healthcare professionals, a list of prescribed medications, test results, warnings, diagnosis, maternity care records, referrals, and vaccinations as well as a log of everyone who has accessed the record. The can also add comments to notes if, for example, information is incorrect.
Clinician concern
The process was long and fraught, necessitating legal changes and research to allay a series of concerns, raised mostly by clinicians.3
The journey began in 1997 in the Uppsala region, a county north of Stockholm, with a project called Sustains 4—an attempt to set up an “internet health account,” much like an online bank account. Sustains was initially hampered by Swedish data protection laws, which did not allow patients to access records.5 It took the introduction of the Patient Data Act in 2008 to let patients in, and Uppsala County Council then issued a trial group of 300 000 patients access to their full electronic health record in 2012.
There was still resistance. “When we launched at the end of 2012, the region’s oncologists wanted to be excluded—almost all physicians thought that full access might upset the patients,” says Benny Eklund, one of the founders of the Uppsala project and a senior adviser at a pain clinic in Ystaad, a town on Sweden’s southern coast. Eklund’s team agreed to investigate
what patients with cancer thought about having full access to their records.
“We asked if patients would be afraid of seeing their lab results in real time,” Eklund explains. “They replied, ‘Of course I’m afraid, but not knowing is no alternative.’ Some said they looked at lab results with a friend—they’d rather cry with a friend than in front of their oncologist. They wanted to be prepared for the next meeting. Those patients that were too scared didn’t log in. Patients are smart—they can take the responsibility themselves.”6
Gradually, other counties rolled out the system, although there were setbacks. Press reports included the 2015 case of Birgitte Holmbom, who unexpectedly discovered she had lymphoma while making a routine online check on her diabetes records.7 Clinicians continued to be wary,3 but Uppsala’s—and ultimately all of Sweden’s—doctors agreed to take part.
They worried that patients would only access their records during weekends and evenings, when no one at the surgery or hospital could answer questions or deal with concerns. But an ongoing research project at the Karolinska Institute in Stockholm has found no evidence for this concern—user activity decreases during weekends and there was no spike in phone calls.
“Although the research indicates that patients’ experience mainly benefits, the fears among healthcare professionals remain high,” says the project leader, Maria Hagglund, programme director for the institute’s global masters programme in health informatics. “Hypotheses are many, but one stresses the power balance between patients and healthcare professionals as a reason for clinicians’ reluctance to share.”
The rest of the article is found here if you have access:
The bottom line is where there are decent high quality patient records these are being made available to the patient. Not a secondary junk record but the exact same record as is being used by their doctor.
This is happening (as per the rest of the article) in the US, the UK and Canada at least. My belief is we are going the wrong way with our pile of .pdf’s.
We need to change course, get the clinician records up to scratch and then have those be accessible for the patient – with both doctor and patient knowing what they are expecting and doing.
It is clearly working elsewhere and can here. It would be more secure, more private and cheaper.
Sounds good to me.
David.
6 comments:
David said “The bottom line is, where there are decent high quality patient records these are being made available to the patient.”
The problem in Australia appears to be that the Health Department and the Australian Digital Health Agency, its Board and multiple advisory committees, believe that what they are trying to cobble together is a high quality, comprehensive, medical record which they anticipate will be of value to doctors and their patients. For whatever reasons, they do not seem to understand many of the major shortcomings of their approach.
In the process the Department and the ADHA have had their ‘belief systems’ constantly reinforced by apparently informed, yet highly conflicted, professional bodies.
This potently dangerous mix cannot be addressed by any reasoned rational arguments posited by others, more experienced and competent in the vagaries and complexities of Digital Health. The barriers to new thinking are impermeable.
You suggest “(We) ie. the Department and the ADHA, need to change course, get the clinician records up to scratch and then have those be accessible for the patient – with both doctor and patient knowing what they are expecting and doing.” As you observe “It is clearly working elsewhere and can here. It would be more secure, more private and cheaper.”
Regardless of prevailing politics your proposal raises four possible options. I would suggest the My Health Record Project, as it stands today, is somewhat akin to a Battleship at full speed ahead which either needs to be turned, slowed, sunk, or put into dry dock for a complete overhaul. From these four choices, identifying the right strategic option will determine whether or not it will be possible to achieve truly meaningful outcomes in the provision of a trusted, accurate, current and comprehensive Medical Record of benefit to every Australian.
Ian it totally correct when he questions the quality of the data in My Health Record.
I wonder if anyone in the senior ranks of AHDA, Department of Health or any of the Medical bodies have actually looked at what is in a My Health Record.
As an example, this is the Pharmaceutical Benefits Scheme (PBS) data in MyHR
* Generic Name
* Brand
* Prescribed (date)
* Supplied (date)
* Form and Strength
* Quantity
* Repeats
* Code
This does not reveal:
* Who prescribed the medicine;
* Why the medicine was prescribed;
* What instructions were given with the medicine;
* What other medication was given that relates to the problem being addressed by the medicine;
* If the patient is currently taking the medication; and
* If the patient has had any reaction to the medicine.
In other words, the PBS data is worthless, could be misleading to the point of being unsafe, is incomplete (many drugs are not covered by PBS) and bears no relationship to anything else in a patient's MyHR.
And the Medicare Benefits Scheme data is equally as bad.
Both PBS and MBS data are all about government payments for healthcare and do not contain any reliable clinical information. In fact they don't even cover all healthcare payments there are other payment mechanisms as well as the government.
Yet the government claims MyHR is a quality source of accurate data on the patient's health.
In their dreams.
The Government thinks its role is in the information business and – in its eagerness to profit from information and is/ has become growingly over-onsessed. it may well now be under the Current CEO and Government Industry leadership be too late, to realise and change back on the coarse that they (Government) are in the ‘trust’ business not the information business. The Department destroyed any resemblance of inderpendant and solution nutrality (NEHTA pre 2011).
There is a role for ADHA, but not under its current direction which is fast becoming untrustworthy and open to clever manipulation by well seasoned industry and professional bodies. I do not blame these organisations, I blame whoever put in a naive CEO with no real experience in Australian politics or business arena, forever tainted with the NHS debacles that destroyed public trust with the NHS, once a trusted Brand.
Information will mature and flow in a natural evolution, guidance and support from Government to enable a vibrant and level playing field for all under-pinned by a standards community, governed by conformance and data quality bodies, privacy and data access oversight to ensure the rights of Citizens and industry are protected. Sadly For me ADHA will be rembered for destroying this last great hope.
Government opting-out of opt-in was a huge error of judgement. The deep-seated reasons behind the failure of Opt-in have never been thoroughly and forensically examined.
In 2013 the Department commissioned a ‘Review’ of the PCEHR Opt-in approach [The Royle Review]. The Review recommended rebranding the PCEHR to My Health Record (MyHR) and discontinuing the Opt-in approach by replacing it with the current Opt-out approach anticipating that Opt-out would accelerate the uptake and use of the MyHR by doctors and their patients.
The recent Evaluation of the Participation Trials for My Health Record [Siggins Miller November 2016] has done nothing to prove the efficacy of the Opt-Out approach; quite the contrary. Even so, the Report has been used by the Department to support its recommendation to COAG that the Opt-out approach should be expanded nationally as a high priority.
The PCEHR Opt-in approach failed to develop traction with doctors and with the public despite a series of nationally targeted marketing awareness campaigns conducted over many months by NEHTA, the Health Department and Divisions of General Practice. A miscellanea of Wave 1 and Wave 2 Trial implementation sites were generously funded and specialised implementation ‘Tiger Teams’ were established to encourage and support medical practices to embrace the PCEHR, while a well-signed promotion bus crisscrossed the country spreading the message and reinforcing the benefits of the PCEHR. None of this achieved any significant uptake of the PCEHR by the medical practices and doctors in the three Divisions of General Practice selected for the Wave 1 trials.
All available objective evidence indicates that both the Opt-in and Opt-out approaches have failed. Surely it is time to step back, to ask some really hard questions:
- Why have the Opt-in and Opt-out models both failed?
- What are the deep-seated reasons behind these failures?
- Why are doctors and their patients not using the MyHR?
Why have the reports commissioned to-date not attempted to traverse this minefield and drill-down to the very essence of these questions?
IMHO, ADHA should focus on just one line from Ian's excellent precis:
"Why are doctors and their patients not using the MyHR?"
If this question is not answered and addressed MyHR will still be unused even if everyone has one.
And the most common answer in the past "because not everyone has one" is IMHO, GPs being polite.
The Royle Review (Recommendation 21 Page 16): Implement a minimum composite of records which must include: Demographics - Current Medications and Adverse Events - Discharge Summaries - Clinical Measurements.
"This will dramatically improve the value proposition for clinicians to regularly turn to the MyHR.
The Siggins Miller Review of the Opt-out Trials makes it abundantly clear that the value proposition was patently wrong - NO DRAMATIC IMPROVEMENT in clinicians turning to the MyHR was evident.
As Ian Colclough said "Government opting-out of opt-in was a huge error of judgement."
Any competent software developer knows that if the product does not meet the user's needs it will not be used. It's that simple. On the other hand if the MyHR product was competently designed, user-friendly and functionally useful, and IF it offered real value to the clinician and the patient it would be used and the Opt-in approach would most likely have been highly successful.
By comparison any attempt to artificially drive the market to force it to go against its will only serve to create more angst, bitterness and disillusionment with the My Health Record and in the process widespread damage to any chance of a successful deployment.
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