Ensuring care has the patient at the centre is a key aim for the NHS and something we’re particularly interested in at Anthony Nolan. Our post-transplant care pathway sets out one approach to ensuring the breadth of patients’ needs are covered after a stem cell transplant.
Anthony Nolan worked with the Kings Fund to host a virtual roundtable looking at how digital ways of delivering care might help to make it more personal to the patient, and what the risks of digital care might be. We have also recently published our report ‘Stem cell transplants and COVID-19: What have we learned from patients during the pandemic?’ which in part covers reflections on digital care during the pandemic.
As the health system looks to digitise more services, digital healthcare potentially has a lot to offer for post-transplant care, including enabling the different points of care to work closely together. Some of the key themes and points to consider that came out of the roundtable are outlined below.
Could digital inequalities drive further health inequalities?
There is a risk with the increased use of digital care that people are excluded from receiving the care they need. For stem cell transplant patients, there are benefits of face-to-face consultations as clinicians may be able to spot long-term side effects and complications such as Graft versus Host Disease. For those who do not have a strong health literacy or experience language barriers, telephone or video consultations could mean that getting the care they need is harder.
Digital inclusion needs to come from the perspective of all of us as citizens, patients and carers. A huge part of the patient pathway is the support that they receive from those around them. It is important to consider how digitisation could enable or disable local community support that is so essential to those who are most disadvantaged and do not have family support. When we are co-designing whole pathways and apps, we must involve people who have fewer digital skills in the process. By using an inclusive approach to designing pathways, we can ‘design out’ inequalities.
Where does the responsibility lie?
We want to avoid sub-optimal pathways for those who struggle to engage digitally, so a question is posed around who has the responsibility for supporting individuals and organisations in delivering personalised digital care. One best practice example we heard about at the event was 100% Digital Leeds, where different organisations are joining up and tackling similar issues in a city wide joined-up approach.
Bringing the whole health and care system together is important, but it cannot be done without the necessary investment in digitising community services. Without this, the system is set up to fail before it has got going. To successfully digitise healthcare this requires a long-term strategy and organisational design across the system, involving citizens and the third sector. We need people with the right attitude and mindset to deliver it.
Moving to 4-dimensional healthcare
Several roundtable attendees mentioned the importance of moving to 4-dimensional healthcare. 2-dimensional means mental health as well as physical health is considered, whilst 3-dimensional healthcare offers a holistic approach to understanding patient’s life context. 4-dimensional healthcare will go a step further, where patients are not seen as passive participants but rather play an active role in finding solutions for their own health.
It is important to provide patients with the opportunity to give feedback about their healthcare interactions. Whilst some people will find remote consultations useful, others will prefer face-to-face consultations. During the pandemic, people weren’t being asked as often as was needed what was working for them and how things could work differently. By building in a feedback mechanism it will allow people to be active participants in their healthcare and part of the solutions process.
Outcomes first, digital second
Something that came out strongly in the roundtable was starting from the point of seeing the whole person and what they need rather than beginning with digital and what it can offer. Digital is a means and enabler which is part of the health service and shouldn’t be the only route. It is also important not to take an existing model and then simply digitise it. Digital care provides an opportunity to rethink how personalised care is delivered. Individuals should be part of the decision-making process so that they can outline how digital care will help them throughout their pathway, rather than digital driving the individual’s decision-making.
Next steps
The roundtable has given us lots of useful food for thought and things to consider when looking at using digital technology to improve care. We’ll be writing up a short report with the findings of the roundtable which will become part of the evidence base we’re gathering to help us see the post-transplant care pathway implemented.
In the meantime, Anthony Nolan has a “virtual booth” at the King’s Fund Digital Health and Care conference from Monday 2nd – Thursday 5th November. Attendees can visit our booth to hear more, or discuss ideas with us!
MSD has provided funding to Anthony Nolan to support this event and related logistical costs and has had no influence over the agenda, content or associated outputs, except to ensure compliance with the terms of the ABPI Code of Practice