Author: Lesley Bethell, with the support of other Bevan Advocates.
Now is the time to make the best use of all the resources available those with the burden of decision making around health and care services-the Bevan Advocates offer a unique opportunity to rapidly inform, test ideas or suggest innovation that might helpfully improve services.
The present need to make and respond rapidly to policy and service delivery changes offers both a threat to and a real opportunity for innovative patient and public input to both these processes (see, for example the recent BMJ blog by Kaisa Immonen: The views of patients and the public should be included in policy responses to Covid 19). In Wales, policy production and patient and public involvement have not so far been linked in a structured or developed process. The NHS Wales website suggests that patients or members of the public contact their local health board if they have suggestions to make. Whilst other areas of the United Kingdom have more developed strategies, (Public and Patient Participation, NHS England, 2017) there is not a great deal of evidence that these are being implemented in a consistent or effective manner.
Ensuring that patients and the public are as actively involved with both plans for and delivery of services will help to ensure that they are most effective and desirable.
There is little point in times of crisis in investing heavily in services that patients do not feel are important or are unwilling or unable to access for a variety of reasons, including fear of infection. One example is the way in which many patients are preferring video link or telephone consultations for follow up clinics rather than a visit to hospital.
However we should be mindful of those with hearing or sight deficits as these channels compromise their full participation in consultations. Another challenge lies in supporting patients to provide clear descriptions of their symptoms. The vast majority of patients have never been supported to recognise and describe their own symptoms and concerns in a way which provides the best basis for choosing amongst treatment options. This need for ‘translation’ to suit new channels of communication can present real challenges both for health professionals and patients. Innovative ways to understand public and patient needs and wants offer the chance to incorporate these into both policy and planning and service delivery and redesign. This will ensure that services are at least in line with input from patients who might have a very different experience from those attempting to meet their needs in the most prudent way. If co-production of the best health and social care outcomes are the goal both patients and professionals are aiming towards then it is clearly important for them to share an understanding of what helps and what hinders.
Public and patient inputs of the widest diversity possible are essential to ensuring the most prudent use of resources when things are stretched to their limits. Patients and the public vary enormously across dimensions of age, race, experience and socio-economic status. If we are to understand the best ways to incorporate insights from this hugely varied group there are some standards in use locally which might offer some help. The Health and Care Research Wales Public Involvement Delivery Board has co-ordinated input to and works to the U.K wide standards for good public and patient involvement. These are based around the core belief that making links between decision makers in health and social care and patients and the public via research quality improves decision making. They advocate using the widest possible range of methods to ensure the widest range of perspectives is captured whilst also acknowledging that constraints exist on being able to resolve dilemmas around provision. Willingness to ‘borrow’ from other disciplinary work areas and to see commonality between enterprises focussed on similar goals can pay rich dividends and avoid the necessity for the duplication of costly processes or ‘re-inventing the wheel’ as I’ve argued elsewhere. (Griffiths, L. (2003) Making connections: studies of the social organisation of healthcare. Sociology of Health and Illness Silver Anniversary Issue Vol 25, 155-71. [ISSN 0141-9889])
Many of the principles embedded in these standards offer helpful insights for making connections which can support construction of effective bridges between government, managers, and patients and the public. It’s vital to keep in mind that anyone from any sector is also a patient or a potential patient. This fact can be overlooked in work that can seem more divisive than collaborative but is key to seeking and succeeding in real co-production of the most effective health and social care services.
The ability to put oneself in someone else’s shoes, to see things from a very different perspective is as important for patients trying to provide relevant input to policy and service delivery as it is for government ministers. It’s now a well established truism that good patient involvement from the outset improves health and social care outcomes and relevance*. This is not to assume that this is a simple or cost free process either in time or other resources. However, the ultimate goal of research is to deliver the best quality information as a basis for action.
The same priority must also drive policy and service delivery decision makers. We fully support the view that understanding and wherever possible rapidly incorporating the views of patients and the public into the best quality information for action is vital for the most prudent and effective use of resources in this crisis. This is something that we believe that we, as Bevan Advocates, can offer the Welsh Government, not just in the present crisis but as an ongoing process as we move forward.
Public involvement in health research: what does ‘good’ look like in practice? (Liabo et al, 2020)
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