From transparency to collaboration: patient access in Sweden, USA, UK and Netherlands

Today I co-presented at the BMJ’s Quality and Safety in Healthcare 2018 conference. Maria Hägglund, Associate Professor at Sweden’s Karolinska Institute, spoke about Sweden’s experience with the government patient portal and the USA OpenNotes movement to show all written notes to patients.

I spoke about PKB’s use in the UK and the Netherlands.

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Sweden

Some fascinating points came across from Sweden’s portal. From the population of 10 million, 46% have logged into the government portal, but 18% (1.8 million) have logged into the patient portal section of the government portal. In any month, just 48,000 people log in (0.48% of the total population, and 2.67% of those who have ever logged in). PKB’s customers have around 10% of their registered patients logging in each month, but they have so far focused registration efforts on patients with active long term conditions.

Only 25 people per month add a comment to their Swedish record. Maria is one of the 25 of course. The government portal does not allow the patient to enter any data. The comments feature – for the patient to comment on what the doctor wrote – is limited to 500 characters per entry and is quite obscure to find as the professionals had been so against its availability. PKB allows the patient, carers and any of their chosen professionals to enter any data into any part of the record, including care plans.

The data in the system are divided by council, so if you received care from providers in two councils you have to click on each council to see the separate data sets. PKB combines all data from all providers into a single view for each patient.

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All ages use the system (56% of people over the age of 76 use the internet in Sweden). But younger people are more likely to do so, and women much more likely.

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The timeline page shows a timeline of health care events. This is simple to understand.

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But requires a lot of scrolling to get the full picture:

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We worked hard to combine usability with power in PKB’s timeline view:

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Sweden’s regulatory approach has been to mandate the availability of data from all government providers in all provinces, but to allow each province to decide when to switch this on and what data to make available with their choice of delays. Uppsala was the first to go live and shares the most the most quickly. But they still do not share alerts and notes. I was surprised to hear that the capital – Stockholm – was sharing the least data, and delaying display. From 2020 all public providers must share all data with no delays. Although health care is publicly funded for everyone in Sweden, only half of providers are public, and they are still exempt from this data sharing.

I once presented after the CIO of Uppsala and it was a joy to hear him describe their pioneering work. In the beginning they were stuck as Sweden’s implementation of the Data Protection Act required any party accessing a patient’s record to have an information governance officer. Who is the one party who did not have such an officer? Why the patient of course, who by law was thus prevented from seeing the record. The Swedes quickly fixed the bug in this law.

The CIO also described the experience of tracking a package from the USA across European airports through customs to his house. When the package was stuck, he knew where it was stuck and was able to call and fix the problem (paying import tax). That same month, his mother was in hospital, and even as he worried about her progress and whereabouts, he did not know she was discharged. Until her taxi driver called from outside her house saying she did not have money to pay or keys to get in. He drove over to pay the taxi driver and help his mother. He desperately wanted to track his mother’s progress as easily as he tracked his package.

This is one of my favourite features in PKB, notifying carers about admissions, transfers and discharges for their loved one in the hospital.

USA OpenNotes

OpenNotes as a movement is fascinating. Although it is still just about access – with no data entry or patient control – the group’s researchers are rigorous and systematic in documenting the evidence. They are really advancing the case for adoption, using data to overcome clinicians’ strongly held misconceptions.

At the end of a 20,000-patient 1-year pilot in Boston in 2010, 99% of patients wanted to retain access, and 85% said this would influence their choice of provider. All 100 participating GPs continued, something NHS England should learn from in forcing the GP electronic health record providers to make the notes available to patients in the national contract. Although PKB shows patients their EMIS GP data, EMIS and the other providers still do not release any of the free text notes.

Audience polls

Maria ran some great polls with the audience. A quarter of the 90+ audience were health care professionals and half were managers.

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As you can expect from the audience who chose to turn up, ⅔ had access to their records (but half of these people never actually accessed their record). A mere 3 out of 91 people had gotten access through the paper record. The 25 who said they don’t have access almost certainly lived in a country which gave them the right to access the paper record. But this is such a laborious and bureaucratic process that very few bother. This is why digital patient portals are so powerful, they make access much easier and so much commoner. The next driver of usage is thus the usability of digital portals.

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Asked to enter in free text the two most important risks and challenges, the word cloud (generated in real-time by the very cool Mentimeter) showed privacy, anxiety and misinterpretation. Privacy is built into PKB with encryption for security and privacy labels for data sharing that is sophisticated but intuitive. One of the audience members asked if others had written “anxiety” referring to patient or professional anxiety. “Professional”, said everyone; they clearly had no doubt about patients’ ability to cope, but the clinicians’ worries worried them.

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And what were the advantages? Transparency and empowerment of course. Everyone wins when patients know best.

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