News, Now

Panel discussion: patient engagement, patient-centred solutions, and managing patient expectations around digital

For a recent HTN Now panel discussion on the topic of patient engagement, we were joined by a panel of experts to talk about current priorities and projects in this space, to share learnings on adopting patient-centred processes and solutions, and to highlight outcomes and challenges around engaging patients with support from digital.

Forming the panel, we welcomed Andy Webster, consultant in emergency medicine and CCIO at Leeds Teaching Hospitals; Sally Mole, senior digital programme manager – digital portfolio delivery team at The Dudley Group; and Brendan Casey, CEO of Swiftqueue.

Sally offered a brief introduction to her role and a few of the key patient engagement projects underway at The Dudley Group, highlighting her clinical background, previous work on the organisation’s EPR, and the trust’s digital portfolio, including e-consent, remote health coaching, and the emergency department digital integration (EDDI) portal, which links 111 services with the ED so the trust can get visibility on “who’s coming through the front door before they arrive”.

There’s also the trust’s electronic patient referral service, Sally continued, “which is an ICB-wide project looking at how patients can get onto different pathways without going to their GP”, as well as patient-initiated follow up, digital letters and e-forms, where Sally shares the trust is looking to “send out questionnaires to patients to answer some questions and do some triage before they come in to hospital”.

Andy shared some insight into the current situation in Leeds, where he has been CCIO “since 2018”, citing the trust’s work on electronic discharge advice notes, patient appointment letters, digital consent, a virtual fracture clinic, and more.

“We’ve also got a professional patient team – a group of people who represent the patient voice in the trust – so we rely on those,” Andy said, “and lot of the complaints we get are because patients aren’t given information in a way they understand, or a way that is useful to them, so that”s really useful.”

Brendan talked about his own background as CEO and co-founder of Swiftqueue, including the company’s work with “65 NHS trusts, offering a system of engagement for patients to have access to their referral and appointment information” across a range of settings and use cases within the NHS.

“We’ve also looked at how to delegate access to carers and family members, to help ensure that patients are able to do what clinicians are asking of them, and ultimately to support them in attending those appointments,” he added, “as well as our work more recently with community diagnostic centres to provide that digital front door for patients to have access to a number of different services”.

The role of digital in supporting patient-centred care

As the session got underway, our panel turned their attention to the role of digital in supporting patient-centred care, with Andy offering a clinical perspective on how digital can support shared decision-making, enhance engagement, and improve outcomes.

“It’s not going to work for everyone,” Andy said, “but it’s good to have that option there, and I think there’s a number of different avenues to help patients find the information they need, like maybe a reminder of things a consultant has said during an outpatient appointment. Digital gives patients that convenience, and it frees up that capacity to offer more options for everyone.”

Reflecting on projects such as virtual wards at The Dudley Group, Sally considered the role of technology in driving success and in “how quickly the project excelled”, highlighting the paediatric virtual ward specifically and the ability to offer care for patients in their own home “with clinicians able to monitor and access that information”, improving the patient experience “massively”.

On remote health coaching within the perioperative pathway, Sally also noted the success of the trust’s work with patients prior to them coming in for surgery, adding that the organisation is seeing “much better outcomes” for those patients engaged in this way.

Brendan and Sally both agreed that a major improvement in this kind of use of digital has been in benefits realisation, with Sally noting that her team have started doing more of this in preparation for future projects, and Brendan talking about outcomes being measured across key metrics such as DNA rates and capacity, adding “there’s a lot more attention on adoption and take-up, and often that’s needed to build support across the trust and to roll that out to other services”.

Talking about one of Swiftqueue’s projects at Imperial for radiology, Brendan said that benefits in terms of a drop from a 12 percent DNA rate to a 3 percent DNA rate have been integral to garnering support. “We have to measure that kind of success, evaluate, and hopefully build on it to do the same in other places”, he added.

Challenges

The panel moved on to discuss some of the challenges surrounding implementation, with Andy talking about personal health records in Leeds, saying, “the pace we’re about to roll that out isn’t as quick as some of our services would like for their patients, so it’s difficult saying to them that they need to wait”.

Andy also picked up on some challenges around integration, highlighting the volume of work involved in trying to connect “20 to 30 products to our electronic health record” and the issues around capacity that this reveals, and noting that this often leads to making a decision to “try and go with the strategic solution which works for 80-90 percent of services”.

“Moving away from paper was a challenge anyway,” Sally acknowledged, “and when it comes to the whole digital adoption, digital literacy and information accessibility agenda, there are lots of hoops to jump through. There are often a lot of other complexities involved like connecting information and interoperability, and integrating those processes in some of the solutions which have been embedded for years can be really difficult.”

A lack of funding can often lead healthcare settings to be “funnelled toward the wrong options”, Sally continued, “like with our maternity EPR – the portal that came wasn’t the best we could have purchased, but at the time we didn’t have the funding”. One of the things the trust is looking at right now, she says, is “trying to find better solutions and finding a trust-wide portal that is fit for purpose for as many services as possible – things have moved forward with things like the NHS app and the Shared Care Record, so we need to move forward with the tech and processes”.

Brendan focused-in on the point around complexity, referring to the “moving landscape” within the NHS, the need for services to constantly evolve and integrate with different systems, adding “post-COVID there are more capabilities, and whilst that can pose additional integration challenges, if we put the foundations in now, then we can leverage those processes and that insight”.

If we don’t have a digital foundation in place, Brendan went on, “then we can’t apply new technologies, or new AI approaches, and for a lot of the digital transformations we’re engaging with now it’s really starting from zero, and departments often have their own initiatives, so it’s getting those to work together as well”.

Although we might not know where the end goal is yet, Brendan said, “we’re all trying, we’re all learning, and as long as we keep sharing that and working with each other, then I think the only way is up”.

When it comes to working collaboratively across the ICS, Sally talked about the work going on in her region to “try and create regional systems where patients can move around the region for their care, trying to share patient loads”. From a trust perspective that means “we’ve got to get our own basics right first, but if you don’t look at a more holistic view your solutions won’t link even if they’re exactly the same as other trusts, so I think there’s a lot more linked-up working to be done”.

There’s also more work to be done on the design of solutions, Sally said, “as we should be designing it as a system-wide solution, not just asking whether it works for our service or our patients – it’s a much higher level of strategic design required to be able to share the data, decide how that information is going to be shared and with what specialty”. Whilst that work is “deemed the hardest” and takes the longest, “we’ve learned that the more upfront planning and research you do, the better the results down the line”.

Moving from implementation to optimisation

A question from our live audience prompted the panel to move on to the topic of post-implementation optimisation, looking at things like increasing patient engagement and incorporating patient feedback.

Referring to this topic as “really complex”, Andy said that “from our experience with the patient-held record, the product we chose was one that needs development around our needs, and that took quite a long time to get the technical bits right, so we could have that integration with our electronic record, and get all the IG aspects right”. Patient engagement at that time was probably lacking, he surmised, “as that meant it took a long time to even do our first pilot”.

From a supplier perspective, Brendan said, “I can definitely confirm that we don’t know everything, and we start out with the best intentions, but it does take time”. The creation of an “implementation playbook”, he shared, has allowed Swiftqueue to highlight learnings and put in place steps for success.

Giving an example of where tweaks were required following the implementation of projects on patient engagement, Brendan talked about how Swiftqueue had worked on referral pathways with GPs and consultants, but “the people we forgot to tell were the reception staff – so the first day the project went live they were getting queries from visitors, and they didn’t know what was happening”. In another similar project, Brendan shared that the team hadn’t considered carer access, “so straight away on day one, we had to incorporate that feedback”.

Ensuring digital literacy 

“We know that patient engagement is basically the main part of the clinical setting,” Sally told us, “and I think the inaccessibility of data is probably one of the biggest problems”. Giving an example of this, Sally said, “even going back before our EPR, it wasn’t that we weren’t getting that feedback from patients; it was that we weren’t very good at recording it, or that information was in siloes – we’ve come a long way since then, and now get direct feedback through events or public-facing sessions”.

Sharing information on implementations is key, Sally continued, “as it’s important that people know service levels might drop by maybe 30 percent before we start seeing an increase in adoption, as people start getting used to the system, because there’s a lot of anxiety around change in general, and if you don’t set those expectations at the beginning, people could think they’re failing when they’re not”. Staff at The Dudley Group are now requesting further digitisation, Sally told us, “because they can see those benefits”, adding “that goes hand-in-hand with the patients, really”.

An example of a recent digital project at The Dudley Group is the trust’s digital letters platform, Sally shared, “and that’s a huge project – we’re looking at how many patients look at those electronic communications, and seeing what we can learn about the reasons they might not be accessing them, to try and optimise, as well as decide whether the acceptance is there, or whether we still need paper letters to be available”. From a user perspective, “we’ve come a long way”, she continued, “and the digital literacy across the organisation has definitely improved, but we’re monitoring concerns and any issues, which is business as usual for us”.

Ensuring patient-centred design

Talking about the importance of patient-centred design and ensuring that the needs of diverse patient populations are met, Andy noted the pockets of deprivation in Leeds, saying, “I think also the average reading age is seven, so we need to bear that in mind, because as professionals it’s easy to think it’s going to work the same for all groups, and that’s where our patient representatives are important”.

On the discharge letter programme in Leeds, Andy shared that the benefits for patients were multi-faceted, because not only did the financial savings help save resources for use in other areas, but it provided “opportunities to improve workflows for clinical teams”, sped up the discharge process, and see beds freed up earlier in the day. “That made us realise the benefits of better patient flow from something as simple as improving the process of discharge letters,” he said, “and we had the chance to identify at the start what patients actually wanted from a discharge letter”.

“The approach is trying to make it as easy as possible for everyone,” said Brendan, “and ensuring that families and carers have access, but also that that alternative route is available where needed”. Different groups of patients may have different priorities, he continued, “as in a project we did in maternity, the mothers were telling us they wanted to do everything online, but then you have other clinics that don’t want that”.

“We have a tendency to overcomplicate things when we don’t need to,” added Sally, “and I’ve learned that keeping it simple and intuitive is the best approach, keeping terminology simple, having information right there, because we’re not there to train the patient or run through it with them”.

Looking to the future 

On the future of patient engagement in Leeds, Andy talked about the need to “optimise current solutions”, saying, “we’ve only got so much in terms of resources, so we need to look at using what we’ve got to reach as many patients as we can”. Ensuring patient trust is also essential, Andy said, “and nothing will go through without making sure data is safe and secure – I think we have a good history of doing that, and engaging with patients to make sure they know that, involving patients, and making sure we celebrate our successes”.

For The Dudley Group, Sally shared that there are “24 projects on schedule to be delivered by March 2025”, and that her focus has been on planning up to 2027, “because there’s a backlog of things waiting in the queue waiting for some resources”. She also echoed Andy’s point around celebrating success, adding “we don’t tend to celebrate successes enough – we’ve delivered a lot over the past five years and we need to go back and have a look at those things, because we didn’t celebrate that enough”.

Optimising and taking a closer look at some of the impact and insight to come out of those projects will also be key, Sally told us, “as there’s always the risk that the more technical solutions you have, the more chance there is for siloed information at the detriment of patient experience, so I’m really keen to look at the data and see what we’re actually getting out of those solutions”.

Brendan talked about feedback from user groups, talking about how in oncology there’s a need to recognise that patients may have “bad days”, and to allow patients to come to health services with their availability, rather than the other way around. In the future, there’s a temptation to look to AI, he continued, “but the first area I see AI helping in the short term is in identifying potential patients who may not be adhering to their appointments and increasing communication to them, helping us target those communications, using that information to be more precise in our approach”.