EnACT patient-centric design in digital health development
New practical guide walks digital health entrepreneurs through the patient and public involvement and engagement process.
Digital transformation could revolutionise healthcare, making for happier, healthier populations – but only if solutions are designed and deployed with patients at the heart.
That’s why a newly published, evidence-based guide for digital innovators, from the Academic Health Science Networks (AHSN) Network, the University of Plymouth, and Boehringer Ingelheim, aims to shift the conversation from “why” to how”.
How to involve and engage patients to NHS buyers for free in digital health tech innovation provides health entrepreneurs and innovators with a practical framework for developing and co-creating digital solutions with patients and the public.
Richard Stubbs, vice chair of the AHSN Network and CEO of the Yorkshire and Humber AHSN, told pharmaphorum that while digital had the potential to tackle many of the challenges faced by healthcare systems the world over, it will only succeed if it is patient- centric.
“Healthcare has a long way to go in terms of really exploring the benefits of digital. But we can’t do that unless we have the same user- centric design that we see in other sectors,” he said, adding that there has been a “explosion” in digital health initiatives in recent years.
More than 300,000 healthcare apps are currently available in the UK alone, yet just six in ten innovators consult patients before developing their technology.
“If we're not designing our services around our patient needs, then we're not going to meet the full requirements of what our population needs. That's just as true for digital technologies and transformational patient pathways as it is for traditional services,” said Stubbs.
“But a lot of the infrastructure we have in place – the regulatory framework, and just the way we have built things in the past – needs to be adapted to the exploit the pace of digital.
“That’s why we need guides like this one, that are built from the ground up with digital at their heart, rather than just trying to add digital into the current frameworks.”
Moving the conversation
The importance of patient and public involvement and engagement (PPIE) has been well documented, but there has, to date, been a lack of practical advice on how to implement and manage meaningful processes.
Said Stubbs: “We can talk to the rationale and to the business case or value proposition of why patient-centred design is important.
“But we have to remember that a lot of entrepreneurs who come into this space come from a digital, not a health background, or they are small- to- medium- sized businesses, or sole HCPs working alone. They need someone to walk them through those critical steps, particularly at the earliest stages of innovation and design, to make sure they have the patient by their side at every step of the way.”
There is a business as well as a humanistic element to this, he went on. “Of course, innovation that is built with patients at the heart is innovation that will be adopted and spread. That’s what people who get into this space are passionate about – they want to transform the lives of patients.”
Evidence-based approach
Developing the guide, which Stubbs said would continue to evolve over time, was a collaborative effort between Boehringer Ingelheim, AHSN, and the University of Plymouth.
The university’s systematic review, Meaningful patient and public involvement in digital health innovation, implementation, and evaluation, provided the academic foundation. A Delphi study and a series of roundtables and workshops then brought a diverse set of stakeholders together to build upon that work.
“This is not something that has been developed in isolation,” said Stubbs. “I think we can absolutely say that it has had input from every part of the ecosystem that you would expect to be influential in making sure we are pressing all the right buttons.
EnACT
The result was the EnACT (engage, acknowledge, communicate, and trust and transparency) principles, as set out in the guide:
- Engage: Involve people early and throughout.
- Acknowledge: Collaboratively discuss and agree intellectual property (IP) rights from the outset.
- Communicate: Develop a feedback loop.
- Trust and Transparency: Provide clear assurances and information about patient confidentiality, data privacy, and security.
A free, invaluable resource
Asked what made this project different from what has gone before it, Stubbs pointed to its practical application.
“There is an awful lot in the literature and some great case studies on how PPEI has impacted on design, development, and, ultimately, usage. But we needed something that would be the digital equivalent of a well-thumbed resource: a template that advises people on every step,” he said.
“It’s about making sure people do not miss any of the vital PPIE steps, but we also need to ensure people aren’t wasting their time and resources on doing things that are not necessary.”
Stubbs and the rest of the team hope the guide, which is free to download and use, will help to set standards that firmly place patients at the centre of digital transformation.
“The more people see this as something that should be guiding their activity, the better digital transformation will be for our patients. That is better for the NHS, which is better for everyone,” he told pharmaphorum.
To download the free guide, click here
About the author
Amanda Barrell is a freelance health and medical education journalist, editor and copywriter. She has worked on projects for pharma, charities and agencies, and has written extensively for patients, HCPs and the public.
