- Stephen Armstrong, freelance journalist, London, UK
Thursday, May 11, 2017
I Suspect The ADHA Is Swimming Against The International Tide On Patient Record Access.
This appeared a few days ago in the British Medical Journal.
BMJ 2017; 357 doi: https://doi.org/10.1136/bmj.j2069 (Published 02 May 2017) Cite this as: BMJ 2017;357:j2069
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.
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.
Posted by Dr David G More MB PhD at Thursday, May 11, 2017