Transforming healthcare through consumer engagement

Sally Hussey, Principal Writer and Editorial Director, Granicus

Can consumer engagement truly incorporate patient and carers in healthcare decision-making?
The Patient Leadership Triangle, a new ebook by Patient Director David Gilbert, rises to the challenge.

Traditional public and patient engagement is, seemingly, committed to a top-down method of engaging patients. With a narrow focus on service user experience, ultimately, it distances patients and carers from decision-making. But what if it were possible to equalise power across executive, corporate governance, design and delivery? What if equal involvement of patients and carers as an integral part of decision-making could lead not only to an authentic engagement, but humanise healthcare for patients, staff and health professionals?

The first Patient Director in the UK Health Service, David Gilbert’s new ebook The Patient Leadership Triangle (Granicus, 2020) offers an engagement model that overturns this perception as it moves toward an authentic consumer engagement. Gilbert is a pioneer of the concept of patient leadership – where patients work alongside managerial, clinical leaders at local, regional, national and international levels to impact organisational change, education and training and health service delivery and policy. An impact palpable in his recent book The Patient Revolution: how we can heal the healthcare system (Jessica Kinglesy Publications, 2020). Documenting the hazardous fragmentation across the healthcare system in the UK, this inspiring collection brings to light patient leaders dedicated to change: Michael Seres, dealing with practical consequences of a bowel transplant, maximised his business background in consumer product licensing to create the world’s first smart care platform for stoma patients, including the first-ever smart medical bag; Patrick Ojeer, a father caring for his son with sickle cell disease, helped planning of the UK’s Health and Social Care Act 2012 that reshaped how commissioning was undertaken for specialised services; Karen Owen pioneered her own Health Maker vision that provides training and support to patient leaders; Trevor Fernandes influenced the lead up to the tabling the Health and Social Care Act to enshrine a corporate duty to involve patients and the public in ongoing decisions about healthcare changes;[1] and, Ceinwen Giles, founded the cancer support charity for young people, Shine.

But, given the changing role of the healthcare consumer, it is now an expectation that consumer participation in their own treatment is a key indicator of healthcare performance and quality. To be sure, partnering with consumers and co-designing inclusive healthcare is a key driver behind engagement frameworks that ensure consumer voices are central to their own care. Safer CareVictoria  introduced a framework early last year that works to safeguard consumer voices and experiences drive health services and health system improvements. Using a consumer-centric methodology, where people were asked what was most important to them, the framework elevates consumers – people, families, carers and communities of healthcare users and representatives – as key partners to improved patient outcomes. As Director Consumers as Partners, Louise McKinlay, suggests: “Consumers play a vital role in helping us to avoid making the same mistakes repeatedly.”

Yet, in outlining a practical engagement model, Gilbert aims to revolutionise traditional engagement practices across healthcare. Focused on the UK, he traces the rise of patient leadership over the last decade, which emerged out of the acute disconnect with patients created by a siloed approach to healthcare. “Focusing properly on what matters to patients can only be done if patients are part of decisions,” he writes. Gilbert reflects on his journey to the first appointed Patient Director at The Sussex MusculoSkeletal Paternership, where he forged a non-traditional model of engagement: “The model has emerged, as many things do in the health service, from a combination of good intentions, experimentation and gradually evolving clarity of purpose.” Introducing the ‘Patient Leadership Triangle’, however, he reimagines engagement across the sector. Here, the ‘Patient Director’, operating at an executive level, hardwires patient-centred cultures, systems and processes; the ‘Patient and Carer Forum’, comprising a mix of patients and carers, clinical and support staff and external stakeholders, constitutes a formal governance committee and provides “reflective governance”; while ‘Patient and Carer Partners’ draw on lived experiences to provide strategic insight and are equal in decision making at all levels. Working together, the leadership triangle oversees programmes of ‘patient-centred’ work.

This emphasis on a practical patient engagement model, more generally, contributes to the over fifty-year history of public participation models. Yet, in its narrowest sense, this is a model that squarely faces consumer engagement in an overwrought health system. Indeed, the focus on patient value during the current pandemic can seem inconsequential as the urgency of the crisis eclipses patient and consumer input. And although we are caught in the maelstrom of crisis management of the coronavirus pandemic and virulent spread of COVID-19, there is optimism around the future of patient leadership. If only in communities’ inspiring responses, where community connectedness has risen to the fore. Yet also in the shift in patient-professional interactions requiring virtual care, the lived experience of health professionals and the activation of peer support networks in mental health. Post pandemic, patient value, it seems, will continue to move center-stage.

 This ebook is freely accessible to download at Granicus.

[1] Section 13H, Health and Social Care Act 2010. See Gilbert, David, The Patient Revolution: how we can heal the healthcare system, JKP, London, 2020, p.165. Fernandes was also one of the “experts by experience” in the Keogh Review (2013) that experimented with inspection models, p. 171.

Author Bio: Sally Hussey is Granicus’ Principal Writer and Editorial Director. She has an extensive background in the publishing, academic and cultural sectors. She is also recognised by the Who’s Who of Australian Women.