The board, which gave MyMR the #HealthTechToShoutAbout award at the Health Tech Awards 2019, was impressed by its technical architecture and its achievements; and keen to debate how the NHS could be encouraged to take up its approach.
University Hospital Southampton NHS Foundation Trust has been working on My Medical Record for almost a decade. It unveiled the first iteration of the personal health record at the Picture House cinema on Southampton docks in 2012.
Kevin Hamer, MyMR’s programme manager, told the Highland Marketing advisory board that he and chief information officer Adrian Byrne had been involved "since day one" so "this is very much mine and Ade's baby."
Bringing up babyThe first iteration of MyMR was built using Microsoft HealthVault which, at the time, was being pitched as a "service like PayPal" that would manage personal information and exchange it with health IT systems.
That didn't pan out (Microsoft will close the service on 20 November) so University Hospital Southampton worked with its supplier, Get Real Health, to move it onto new technology. The record uses InstantPHR, a patient engagement platform, and OpenPHR, a data store and development platform.
The trust initially hosted these platforms itself. But last year, it decided to stop doing this because, with 10,000 patient records live, the service had got to the point where professional hosting made sense. MyMR is now hosted in the Microsoft Azure cloud, so it can scale securely as required.
The PHR works on desktops and is available as an app; and is about to have its user interface updated. Summarising, Hamer told the board, "MyMR is a cloud-based service that we see patients as owning. This is not our data, or the NHS’ data: it is the patient’s data. We just look after it; although we are opening it up as well."
Two-way interactionsAt heart, MyMR is an information store. It holds demographic details about patients, which they can amend, information about their history and condition, and hospital documents such as letters.
Hamer said that, while all of this is "basic stuff" just having an up to date address or mobile number for a patient “can be really useful”; while patients “really, really like” having all their health and treatment information in one place.
All of University Hospital Southampton’s patients are being invited to sign up for a MyMR account, if they are over 16, there are no safeguarding issues, and the hospital has a phone number for them. Up to 800 patients a week are doing just that.
However, MyMR also enables two-way interaction between patients and the hospital. Clinical teams can ask patients to fill in questionnaires, keep diaries, or upload monitoring data from scales or Fitbits and similar devices; while patients can use a secure messaging service to contact medical staff.
"We always say that what you can do is limited only by your imagination," Hamer said. "The IT is not really the issue. We have been at this for six-years or more, so the IT works. It is changing services that is harder."
New models, new pathwaysAs an example, he said clinicians often worry that giving patients access to them via secure messaging will increase their workload. The evidence to date suggests, instead, that it dramatically reduces the number of phone calls they receive and makes it easier for them to respond to routine issues.
However, digital advice still needs to be paid for, and the trust has had to work with its commissioners to agree a tariff for work that would once have been done face to face, either in clinics or over the phone. With that in place, the trust has taken active steps to use MyMR to reduce the need for patients to visit its main site, which is locally notorious for being hard to reach and even harder to park at.
Last year, it announced that it wanted to reduce outpatient appointments by 20%; which, Hamer told the board, seemed "ambitious" before the NHS Long Term Plan set the NHS as a whole the "very ambitious" target of reducing them by 30%.
Prostate cancer follow-upThe trust has also been developing clinical pathways that use the features of MyMR. One of the first was a pathway to support men who need follow-up after prostate cancer.
The trust worked with the TrueNTH programme, a global initiative led by the Movember Foundation, and four other UK hospitals on this. Instead of attending outpatients every six months to receive the results of their PSA blood test, men can now access the results as soon as they are uploaded by the lab.
They can also complete assessments, view information and, of course, message their clinical team. The first three years of the project were the subject of a formal study, the results of which have been reported in BMC Cancer.
The study found that outcomes were "the same or better" as for men who receive traditional follow-up, with "lower per-patient costs." However, Hamer told the board the digital service is not only saving money - the £41 a digital appointment tariff agreed with its commissioner has saved the trust £40,000 a year - but clinically safer.
"Issues are picked up much earlier," he said. "Patients get these results before their clinicians and if there is an issue they get in touch and say: 'what now?' That's just much better than the way we used to do things."
Putting the patient at the centreUniversity Hospital Southampton has now developed 20 similar, clinical pathways. It is using MyMR with other patients using cancer services; including colorectal, breast, germ cell and endometrial follow-up.
Young people with renal conditions who are making the transition from children’s services to adult care, and who need additional support, are big users of the app version. Midwives are helping the development team to create a MyMR version of the voluminous paper notes that pregnant women have to bring to scans and appointments.
In discussion with Andrena Logue, the principal consultant at Experiential HealthTech, Hamer said that over the years the project team has developed pro-formas for departments - or other hospitals - to fill in if they want to build MyMR into a pathway; which makes it quick to roll-out.
"A content management system sits behind the product, so we can pull out elements for different pathways," he said. "Sometimes it can take a bit longer if someone wants something we have not used before and we have to code it, but we iterate this all the time."
Over the years, the team has also worked hard on security and GDPR issues; and has well-documented processes to follow. So, University Hospital Southampton's "baby" has come a long way.
Yet it has also stayed true to itself and followed the path laid out for it. "Microsoft HealthVault set out to put the patient at the centre of their care and we kind of fell in love with that," Hamer told the board.
"It didn’t work out with Microsoft, but we are still doing the same thing on a different platform. At the moment, in most areas, there is a hospital record and a patient with access to lots of apps, and what you need is something in the middle that brings things together in a sensible way. That is what MyMR does."
Platforms and open standardsOf course, there are areas of the NHS that are trying to do similar things. Indeed, Hamer said there are four approaches: 'do it yourself'; use third party apps; use a patient portal tethered to an electronic patient record; or use an untethered PHR with open standards so it can interoperate with other systems.
All of these have pros and cons. Hamer said there are some good third-party apps out there (the board mentioned the eRedbook child health record) and recognised that many trusts will be tempted to go down the tethered to an EPR route.
However, he argued that most apps (like eRedbook) are condition specific; while tethered portals will never be “core business” for their suppliers and can be difficult to change if a trust decides to change EPR supplier.
By using an untethered portal with open standards, University Hospital Southampton has not only been able to do a lot of development itself, but 'plug in' other components - including NHS Login.
Until recently, this was not really in line with national policy; but it fits with the life-long record vision set out in the NHS Long Term Plan and the way NHS Digital and NHSX are starting to think.
Encouraging adoptionAndy Kinnear, the director of digital transformation at South Central and West Commissioning Support Unit, and a big fan of the MyMR work, said more needed to be done to make sure its approach is adopted nationally.
"It is deeply gratifying to see that national strategy recognises that this is the way to go, but we still need areas to recognise that if they are going to do a patient portal or a longitudinal record they need to think about the architecture; because otherwise they will get locked into one vendor or SME," he said.
"We have national leadership that gets this, and we have got some national programmes, like Empower the Patient and NHS Login, that are bought into it, but the challenge is to get it adopted across the board. How do we take work like this, and make it national?"
Jeremy Nettle, who chairs the advisory board, agreed. National bodies have tried to 'mandate' standards and NHSX is talking about refusing to pay for systems that do not meet them, he pointed out. But the NHS Number saga suggests neither route will be effective unless there is a monitoring and enforcement mechanism to make sure standards compliant systems are actually deployed.
Kinnear suggested that coalitions of like-minded individuals were more likely to drive change, by adopting it in their own organisations. Cindy Fedell, the chief digital officer at Bradford Teaching Hospitals NHS Foundation Trust, argued that suppliers could also have an impact: "and you need to take them with you."
One to pick upThe whole board also felt that clinicians and patients could have a role, by applying internal and ‘consumer’ pressure to NHS organisations to provide the kind of digital services that have become common in other areas. But one way or another, they wanted to see the approach of My Medical Record, and the service itself, adopted more widely.
As Nettle summed up: "We gave this the #HealthTechToShoutAbout award because it is exactly the sort of work that we want to see supported, and we hope it will be something that lots of organisations take up."
If you wish to contact Kevin Hamer you can connect with him @HamerKev
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