Putting patients at the heart of digital health

Summary

The benefits of giving patients a central role in developing healthcare solutions have been widely demonstrated, but meaningful engagement is still far too rare, particularly in digital healthcare. In this blog for World Patient Safety Day 2023, Clive Flashman, Chief Digital Officer at Patient Safety Learning, looks at the benefits and barriers to engaging patients in developing digital healthcare solutions. He looks at why healthcare innovators struggle to include patients at an early stage of development and suggests some ways that NHS England could help facilitate coproduction through its existing patient engagement and innovation structures.

Content

If you saw a news item announcing that you could now book online to have a face-to-face meeting with a person from your bank, or to visit a kitchen showroom, you’d find it bizarre. You’d be asking, “Why is this newsworthy?” Yet week after week I see headlines trumpeting how wonderful it is that patients can now make an online booking for an outpatient appointment, or something similar. These new technologies have misleading names such as ‘patient engagement platform’[1] when actually they are simply an online appointments application.

Why do organisations use terminology that is so misleading? It’s a problem because many patients really do want to be engaged in their care, yet find the whole system opaque and generally impenetrable. Headlines like this make the promise that patients can have more involvement in their own care, then fail to deliver on that promise. 

The NHS has even got a way of scoring how involved patients are in their own care, called the Patient Activation Measure (PAM)[2]. It is the top rung of a ladder of patient involvement that starts with patient engagement, then moves up to patient empowerment. Sadly, the PAM seems to be almost invisible when one looks at NHS plans and progress reports—perhaps this is illustrative of the fact that so few parts of the NHS really manage to involve their patients adequately. Many papers have been written on the benefits of involving patients in the own care, generally pointing to the better health outcomes, better care experiences and reduced use of healthcare resources of engaged patients (Hibbard and Greene, 2013)[3].

Patient engagement in digital health attracts no fewer benefits and potentially has even more. ‘Co-design’ and ‘co-production’ are terms used very heavily these days to explain how the end users of a solution ought to be involved in its early design, development, prototyping and pre-launch testing. Despite NICE mandating this through its Evidence Standards Framework[4], it still happens far less than it should. Why is this?

Digital health innovators are in a catch-22 situation. They want to pilot their solution to gain access to patients and show evidence of impact, but often they are not given that opportunity unless patients have already been involved in the genesis of the solution. That is not always possible as these innovators (many of whom are originally from outside of the health and care domain) have no knowledge about how to find and engage with patients or end users. 

In my opinion, one of the key things that NHS England ought to be doing via Health Innovation Networks (HINs, formerly called AHSNs [5]), is helping digital health innovators access appropriate patients who can help them to design and develop their solutions. By working in a collaborative way, these patients are not only going to be potentially supporting their own wellness journey, but that of thousands of other people too. The patients involved should represent multiple sectors of the population and embody the principles of the Core20PLUS5[6] programme in terms of reducing healthcare inequalities and improving access to digital therapeutics. 

NHS organisations have recently been encouraged to recruit Patient Safety Partners (PSPs)[7]. This is a new and evolving role developed by NHS England to help improve patient safety across the NHS as part of the new Patient Safety Incident Response Framework (PSIRF). The NHS Patient Safety Strategy includes the ambition for all safety-related clinical governance committees (or equivalents) in NHS organisations to include two PSPs by June 2022, and for them to have received the required training by June 2023. Anecdotally, this seems to be running around a year behind schedule. From a review of the job description, the PSP appears to be a policy and governance oversight role. PSPs might have been a much more valuable addition to the NHS if they had been asked to become involved in the creation of safer tools and therapeutic services that patients would eventually use. An opportunity missed, but NHS trusts could change this themselves in the future if they wished to. 

From my recent interactions with the NHS as a patient and carer, I can honestly say that patients and their needs are not at the centre of the services provided. It is really centred around staff–their availability, skills and capabilities, and their ability to effectively communicate with each other and their patients. We are a long way from value-based care,[8] in which health and care providers are incentivised to give their patients the best outcomes possible.

Until the financial levers of the NHS are aligned with the interests of patients, and the huge benefits of digital solutions are factored into that, patient care in the NHS will sadly remain sub-optimal.

References

1 Gateshead Health NHS launches innovative digital patient engagement service. Gateshead Health NHS Foundation Trust website, 29 August 2023

2 Patient-centred intelligence: A guide to patient activation. The Strategy Unit, 18 November 2019

3 Hibbard J, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013;32(2):207-214

4 Evidence standards framework (ESF) for digital health technologies. National Institute for Health and Care Excellence, 9 August 2022

5 NHS and Government back AHSNs to continue to lead innovation, under new name. The AHSN Network, 26 May 2023

6 Core20PLUS5 (adults) – an approach to reducing healthcare inequalities. NHS England, 10 November 2022

7 Appendix 5: Patient safety partner role description. NHS England, 24 June 2021

8 Hurst L, Mahtani K, Pluddemann A et al. Defining value-based healthcare in the NHS: CEBM report. Centre for Evidence Based Medicine, 2019