THE POWER OF patient advocacy was the recent focus of The Journal‘s Open Newsroom event in which I took part.
For those of us who work in patient advocacy, we hear a lot of rhetoric about the ‘patient revolution’ that is re-directing healthcare towards patients’ priorities, as well as empowering individuals’ to be more involved in their treatment and care. However, in Ireland, this rhetoric is not yet matched by the reality.
I came into patient advocacy work because of a desire to improve how the health system meaningfully engages with all patients in Ireland. I have seen advances in recent years and through IPPOSI (Irish Platform for Patient Organisations, Science and Industry), I’ve seen the creation of a number of opportunities for our patient members (both organisations and individuals) at the national and international level.
For me personally, the ‘patient revolution in healthcare’ will only be fully realised in Ireland when it is viewed through a rights-based as well as a person-centered lens. This means supporting efforts to promote patient engagement alongside patient advocacy.
Three things need to happen as part of these efforts:
The use of human rights-based approaches have been called for by HIQA and in a recent perspective by patient advocates. As part of these approaches, it is essential to see patients and carers as part of the healthcare workforce. This means creating meaningful, supported opportunities for patients in decision-making across all levels in healthcare – national, regional and local.
In the UK, in its updated guidance on embedding shared decision-making in organisations, the National Institute for Clinical Excellence (NICE) recommended the appointment of Patient Directors. Coming from a ‘healthcare service user’ background, these individuals are to be responsible for “raising the profile of the service user voice in planning, implementing and monitoring shared decision making, especially from those in under-served populations”.
Equivalent Patient Director roles in Ireland would be game changers, playing a vital part in reforming our health system toward prioritising partnerships over power, involvement over exclusion and relationships over reputation. These roles can open up adaptable, inclusive approaches to patient engagement, across areas such as service design, quality improvement, clinical governance, oversight and audit, as well as training and change management.
These patient directors can work in close collaboration with clinical and nursing leadership. In 2018, the HSE established the Office of the Chief Clinical Officer (CCO). In 2020 the Department of Health created the Office of the Chief Nursing Officer (CNO). In 2022, we are likely to see the appointment of two new Chief Medical Officers (CMO) in the Department of Health.
An obvious ‘win’ would be the establishment of an office of a Chief Patient Officer (CPO) that traverses both policy and service delivery, and coordinates the embedding of patient engagement and advocacy as part of shared decision-making across the entire public health system.
Working together, this represents a massive opportunity to bring a level of coherence, oversight and accountability into all aspects of patient engagement and advocacy in the Irish public health system.
Seeing patients/carers/advocates as part of the workforce also means remunerating patient advocates appropriately. The Department of Health and the HSE have been working to develop a policy on remuneration, together with a roadmap for meaningful engagement – neither of which has seen the light of day. These need to be published and implemented as soon as possible.
Empowering healthcare professionals
As witnessed by the controversy last year over the draft Sláintecare public-only consultant contract, doctors in Ireland greatly value their autonomy to advocate on behalf of their patients. However, healthcare professionals are not currently trained in other aspects of patient advocacy – namely person-centered approaches to care, including patient engagement theory and practice.
As part of the current root-and-branch reform of education and training of doctors and other healthcare professionals, we need to create roles for patients as educators, whereby the learning environment can support a culture which seeks to engage patients in the exploration of their condition, care, and desired outcomes, as well as promote shared decision making.
This includes evidence-based training on how to meaningfully engage with individuals, their advocates and patient groups, learning from good practices emerging from health research, quality improvement and other fields.
Patients as part of the reform agenda
The patient community, as well as their representatives have warriored for years, for themselves, for their loved ones and for their patient groups. For many, all they have is the independence of their voice, so battles are better fought ‘from the outside’. Equally, many of us know that genuine, ethical, sustainable change can only come about through patient-led partnerships both ‘on the inside’ and together with other health stakeholders.
Most ‘reform agendas’ in healthcare are not seen by patients as something that is ‘their agenda’ but is something they need to go around, rather than be part of. Sláintecare, with its (now defunct) public engagement programme was making inroads on this before it was pulled as part of last year’s ‘reimagining’ of the programme. This decision needs to be reversed through innovative, inclusive engagement approaches with patient groups and the public.
All revolutions need leaders. Realising the patient revolution needs patient leadership, which can come from many sources and backgrounds – people with lived experience, advocates and carers, patient groups, as well as healthcare professionals and administrators.
However, it can only happen if the service and the system has the capacity to engage in an inclusive way and embed the voices and perspectives of the very people it seeks to serve. This, I believe, will transform healthcare in Ireland from something that is ‘for us all’ into ‘our health service’.
Derick Mitchell is Chief Executive of the Irish Platform for Patient Organisations, Science and Industry (IPPOSI)
This work is part of The Good Information Project, which is co-funded by Journal Media and a grant programme from the European Parliament. Any opinions or conclusions expressed in this work are the author’s own. The European Parliament has no involvement in nor responsibility for the editorial content published by the project. For more information, see here.
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