The NHS faces unprecedented demand as we emerge from the COVID-19 pandemic, with huge impetus behind data and digital to build a more agile, efficient, and sustainable health service. Patient experience and expectations have irreversibly changed as has the demand on healthcare professionals to adopt new digital solutions.
As digital health innovators seek to demonstrate that their technologies can add value to the system, the scale of the challenge is clear: as of April 2022, the UK has over 300,000 healthcare apps live on the market3, yet only 6 in 10 innovators consult patients before deciding to develop a new digital health tool4.
Alongside the fundamental catalysts for digital transformation including cost, accessibility, convenience, and advances in technology, lie the real drivers of change – the patients and the clinicians that serve them – who can too often be at the periphery of the conversation.
To change this, the University of Plymouth, the AHSN Network (the national voice of the 15 academic health science networks in England) and Boehringer Ingelheim, today launches the first evidence-based recommendations to drive inclusive digital health tech innovation. How to involve and engage patients in digital health tech innovation, An Evidence Based Guide sets standards to ensure patients are at the centre of digital transformation.
Commenting on the guide, Matt Whitty, Chief Executive of the Accelerated Access Collaborative and Director of Innovation, Research & Life Sciences, NHS England & NHS Improvement said, “Through research and innovation, we can improve patient outcomes and reduce health inequalities. Patient-centred digital technology is an increasingly important aspect of a dynamic and sustainable health system. By ensuring patients are involved in developing these digital technologies we will create solutions that best meet their needs. I hope this guide will help support innovative digital technology development across our health service.”
The new user-friendly guide has combined the results of a systematic literature review, advisory panels and multi-stakeholder input to produce four clear principles (ENACT) around patient and public involvement and engagement (PPIE). The principles make it clear how to involve patients in product innovation and make recommendations around critical issues such as data privacy, intellectual property, inclusivity, reimbursement, useability, and recruitment of patients for health technology entrepreneurs.
The guide not only helps with the initial digital development but also puts in place processes to support ongoing product improvement. By adopting the core principles, digital innovators can continually evolve their product, better communicate its value to the system, and crucially improve patient trust in the technologies created.
Zainab Garba-Sani, a patient and NHS Manager involved in the development of the guide, says, “The pandemic brought digital transformation in healthcare into many people’s lives for the first time and now, more than ever, there is a need to push for patient empowerment in the innovation process. Without it, we risk amplifying health inequities and missing out on the great potential to address disparities”.
The robust academic foundation for the guide was provided by the University of Plymouth’s research ‘Meaningful patient and public involvement in digital health innovation, implementation and evaluation: a systematic review’ which was recently published in the international journal Health Expectations5. The review was followed up by a Delphi study to consensually evolve the ENACT principles. The collaborative effort with Boehringer Ingelheim and AHSN helped stress test the principles, refine and produce the guide.
Professor Arunangsu Chatterjee, Dean of Digital Transformation, University of Leeds and Visiting Professor of Digital Health & Education at the University of Plymouth, said, “Digital health innovation is still fairly new territory and there is a need for clarity to ensure development that is inclusive of patients. Bringing together the academic rigour and expertise of organisations like ours, the commercial expertise of Boehringer Ingelheim and the community network of the AHSN has accelerated positive change, and the development of this resource has been a true partnership.”
Richard Stubbs, Vice-Chair of the AHSN Network summarises why the guide is so valuable, “To drive true change in our healthcare system, a patient-centred approach must be at the heart. The guide makes key recommendations in this area. Simple steps such as building relationships with community leaders and influencers can help innovators engage with patients and families in under-represented demographics. I hope this guide can support inclusive innovation and make a positive impact in the digital transformation of the UK healthcare system.”
Uday Bose, Country Managing Director at Boehringer Ingelheim UK & Ireland, explains the importance of this guide, “Critical to the success of any efforts we undertake for patients is to engage and actively involve them from the start. Modern healthcare systems cannot deal with any wasted time or effort, so we hope that this guide helps the system to create patient-centric innovations in an efficient manner.”
The guide will be distributed across the AHSN Network to support innovation across the NHS, helping to ensure patient voices are built into the digital reform of healthcare and is available for download here.
ENACT Principles:
| Engage:
The principle is to involve people early and throughout. To do that successfully, it is helpful to consider your strategy carefully: why are you conducting PPIE and how do you want people to feel during the process? The different ways of engagement should also be considered: are you looking to conduct user research, test the product, and at which phase. This can impact how people are involved. |
| Acknowledge:
The principle is to collaboratively discuss and agree Intellectual Property (IP) rights from the outset, so you must be clear on who owns the IP and how contributions will be governed. |
| Communicate:
The principle is to develop a feedback loop. This should be an iterative process which entails communicating with participants often about how and why their contributions have been included (or not) and provides the foundation to build meaningful relationships. |
| Trust and Transparency:
The principle is to provide clear assurances and information about patient confidentiality, data privacy and security which requires being transparent, no matter what. If you want to be perceived as trustworthy, be open about risks and respect people’s decisions. |
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