NHS England wants more health services to move into the digital era – and wants them to involve patients. One way of doing both is to create a patient portal.
But what exactly is a patient portal? Do ambitions for portals outstrip the technology or is the technology ready and waiting for the information governance to catch up? And do we really know what patients want from a portal?
Andy Clegg, who leads Emis’ integration and transformation consulting practice, says patient portals will be a “significant part” of integrated care in future; but adds that there is a degree of confusion about definitions.
“For me there are three categories,” he says. The first is information and advice – think patient.info with 18 million views a month or NHS Choices – sites where: “Patients can access validated information and, in the case of patient.info, engage with other people with the same condition.”
By this definition, many of the online services run by condition-specific support groups such as Macmillan Cancer Support or Diabetes UK can be thought of as patient portals. They enable people to access high quality information and join a support network of peers for mutual support.
From information to transactions
Clegg’s next category is portals that give people an element of access to their own information and allow them to carry out transactions.
This is already fairly widespread in general practice where many - perhaps most - practices now offer patients online services such as booking appointments, ordering repeat prescriptions and accessing a view of their health record.
The government has pushed these services heavily, building them into the most recent NHS IT strategy, ‘Personalised Health and Care 2020’, and paying for their use through the most recent GP contract.
But technically Clegg argues that primary care has been able to develop these kinds of portals much more rapidly than secondary care because practices use a single clinical system. “The drive to do it in secondary care is there, but the ease with which you can do it is not. It is much more difficult across multiple IT systems,” he says.
David Roots, executive director for health and social care at Civica, agrees. “In order to be able to build a portal you need to access data from different systems and bring it together. Integrating data from different systems is not something to be taken lightly. It is a complex area.”
That has not stopped a number of portal developments in secondary care, although so far these have been limited to either specific conditions or a limited range of transactions, based on specific use cases, such as digitising care plans for mental health patients, or booking follow-up care.
Tom Whicher is a director of Dr Doctor, a relative newcomer to the NHS IT market at only three years old. The company is working with a number of acute and mental health trusts to develop portals that allow patients to carry out transactions.
“If you give the average patient the opportunity to view their medical record, they will do it once. It is just not that exciting,” he says. “But if you go to them with the offer of managing their appointments or filling in pre- and post-clinic surveys, or you add Google maps to help them get to the hospital, then this starts to transform their view.”
His thesis is supported by evidence emerging from the US where hospitals began working on “meaningful use” stage 2 last year. This phase of an incentivised programme to roll out electronic patient records includes giving patients access to their medical records.
Yet, according to David Hancock, client engagement director at InterSystems, the targets for enrolling patients to earn the incentives have been slashed - because patients are just not interested.
Whicher says offering transactions online is a win-win. Dr Doctor’s pilot sites are showing significant financial savings through reductions in ‘did not attends’ and better clinic utilisation, alongside higher patient experience scores.
This is leading to demand for new functionality. He explains: “When you give people access to their appointments they start to engage on a whole new level and then they start to ask for the next level of functionality.”
Focusing on specific conditions
The renal patient portal patientview.org is the best known of the condition specific offerings, since it has achieved wide adoption across England both by hospitals and patients. It helps renal patients to manage their condition and medication and enables them to monitor their test results and message their unit.
In cancer care, Cancer Research UK and partners this year launched a patient portal for people with brain cancer. This gives patients who want it access to full text pathology reports, information on hospital stays and treatment received, and some imaging reports (though not images themselves).
The portal also allows patients to keep track of their care using online tools and to record information about their quality of life to aid discussions with their clinical team.
More condition specific or use-case patient portals are on their way, says Colin Henderson, general manager for the UK and Ireland for Orion Health.
Orion is working on a cardiac patient portal with a tertiary referral centre whose patients often live a long way away. The portal aims to provide support when they need to visit their local A&E.
At another UK site, Orion is working with orthopaedic surgeons to develop a patient portal that will help decide who needs follow-up care.
“All patients are routinely called for follow-up, and some of them travel four hours only to be told: ‘Everything is fine’,” says Henderson. “The portal will aim to deliver questionnaires to patients that doctors can use to decide who needs a follow-up visit and when an appointment is really warranted.”
He agrees with Roots that the information sharing is complex. “The portal technology needs to support information coming from everywhere. We have made a big investment at Orion in supporting that information sharing.”
The third way: engaging patients
The third and most exciting of Clegg’s categories has yet to really see the light of day. “This will be getting patients to be a core part of their care team by giving them access to their healthcare information and then helping them to take responsibility for it by managing their own care.
“That’s where we will empower patients and drive massive value by giving people co-responsibility.”
This kind of portal is just showing signs of emerging. Dr Doctor last year ran a six-month pilot scheme involving patients in their diabetes care via a portal. It is now working with a couple of the vanguard sites for new models of care on patient portals in integrated care systems.
InterSystems, meanwhile, is working with Co-ordinate My Care, a venture developed by the Royal Marsden to create a shared care record around end of life care.
The idea is that patients agree a care plan with their care navigator (usually their GP) that can be shared around the urgent care system - including NHS 111, out-of-hours GPs and the ambulance service - via a portal, so all care givers know the patient’s end of life wishes.
CMC is dramatically increasing the number of patients who die in their preferred place – most often home. At the moment, CMC is a clinical portal, but the ambition is to create a patient view and to extend the system to long term conditions management.
CMC requires a high level of interoperability and information sharing. Hancock says: “We are doing the systems integration and providing the patient portal using our Personal Community Product to provide a portal that is not tethered to an EPR.”
For Hancock, this kind of sharing across a patient pathway - and therefore across organisations - while involving the patient must be the future shape of patient portals. This is where the transformation lies, he says. It is also where the complexity lies.
His colleague Phil Birchall, who has a global remit at InterSystems, says: “This is really symptomatic of what we are seeing all over the world. Two things have dramatically changed the landscape.
“The first is the global direction of travel to provide care across settings and the second is the consumer or patient perspective. Once you start to look at what a community needs, it is characterised by information sharing and that increases the complexity.”