“I found this an exciting, robust and stimulating exercise, with lay participation being positively encouraged, not merely tolerated”. That was the conclusion of one patient representative on a public consultation into priority setting1.
Are all healthcare public consultations appraised this positively? And if not, why not? I have spoken to members of different interest groups with a stake in public consultation and set out here what I found. But first a health warning – what follows is not intended to be a definitive statement on the subject. My purpose is to stimulate useful debate on a process that is featuring more prominently in the development of healthcare policy.
Within NHS England bodies such as CCGs and Hospital Trusts have a statutory obligation to consult the public on their plans. Taking stock of my experience to date set me thinking about overall quality of the consultation process, whether it’s fit for purpose and what best practice looks like. To help me answer these questions, indeed even to see if clear answers are possible, I have interviewed individuals involved in the management of health-related public consultations as well public representatives who have taken part.
The demographic that provides the majority of public representatives on healthcare consultations seems to be patients with a chronic illness or their carer. Those with a medical problem are more likely than the average to volunteer their time to meet with the healthcare planners responsible for the care they need. However, the topic of consultation is not necessarily top level, strategic healthcare policy. Houda Davis, researcher at the Institute for Voluntary Action Research (IVAR), observes that “compared to consultation programmes on the healthcare system, we see more patients participating in our research programmes when the focus is a specific health condition”. This focus appears to reduce the input of the pubic into overall health system management and this is in line with my personal experience.
What is the the reason for seeking public consultation on a health policy decision? Is it purely a case of an organisation ticking a box to satisfy a statutory obligation? That might be a cynical view but it does weigh on the minds of some public consultees. Public consultation should be an important part of the policymaking process and this is acknowledged at the highest level of public service planning: “Government is committed to effective consultation… targeted at, and easily accessible to, those with a clear interest in the policy in question.”2
Beyond the policy decision under consultation, the public users of a service may play an important and continuing role in the monitoring of a service. A system as complex as public health and social care is bound to evolve. The development of Sustainability and Transformation Plans has been one of the more recent NHS England innovations. According to Nancy Towers, Social Enterprise UK: “There’s an awareness that the successful implementation of a footprint’s STP is dependent on the quality of engagement with citizens and VCSE [Voluntary, Community and Social Enterprise] organisations, particularly in delivering on self-care and prevention priorities.” Effective involvement of the public and healthcare users is part of a growing whole system approach, in which all interested parties need to be engaged.
A theme running through my discussions with the public representatives is the sincerity of the consultation process, the ‘box tick’ concern. There is no litmus test for sincerity. Beyond remaining attentive to the possibility of being a stooge, public representatives can apply a few rules of thumb. Check questions include:
- Has the process started soon enough to genuinely affect policy? There is a balance between having sufficient information on which to base discussions but sufficient time to affect the decision.
- Is the health authority or consultor investing sufficiently in educating the public to allow them to make informed judgements? Building capacity of consultees to enable contribution takes time and money.
- What has been the experience of previous consultations conducted by the same organisation?
One sign of investment in the process — which can also provide reassurance — is independent facilitation by a professional leader.
A professional facilitator should ensure that the objectives of the consultation are clear and that the sections of the public affected by the objective are properly represented. Houda Davis (IVAR) comments that participants should feel that they receive the support a coach would provide to drive and push the discussion forward as well as bringing to the process relevant knowledge and administrative skills.
Professional assistance can also call upon knowledge of best practice and relevant guidelines. For example, the UK Government Code referred to earlier includes seven criteria:
- When to consult
- Duration of consultation
- Clarity of scope and impact
- Accessibility of consultation
- Burden of consultation
- Responsiveness of consultation
- Capacity to consult
More detailed guidance has been developed by the James Lind Alliance for use in research priority setting exercises (see below). Of course, engaging professional support entails a financial investment. Based on her experience, Georgina McMasters, participant in several healthcare consultations, questions whether it is possible to do ‘proper’ consultation without a budget. Beyond the costs of external facilitators, “for ‘face to face’ events, funds must be made available to cover ‘out of pocket expenses’ such as child care cover, travel and parking costs or the consultees will be limited to those who can self fund.”
Lack of feedback provided following a consultation is a frequent complaint. If the members of the public likely to take part in consultation exercises are drawn from the same small pool, maintaining their motivation is an important factor in recruitment for future programmes. This leads into the final question addressed by this article: who should take part in public consultations and how can designers ensure that the interests of the target group are fairly represented?
Based on her extensive experience, Georgina McMasters concludes that, “By enrolling volunteers from the familiar pool groups are frequently unrepresentative of those service users and others affected by a policy change. Many groups are hard to reach by conventional methods of recruiting consultees and it might be necessary to bring in those individuals who work with such groups on a voluntary or a paid basis.”
To sum up, what will be in the mind of a service user or other public stakeholder when deciding whether to commit time and energy involved in a consultation process? This short article suggests that they might ask the following questions.
- Will the public views truly influence the outcome?
- Will I be enabled to make informed judgements and be supported in practical ways?
- Will the process be run according to professional standards, possibly with external facilitation?
- Will I be informed of both the outcome of the consultation and, importantly, be engaged in the ongoing monitoring of the new policy as it is implemented?
Public health authorities in the UK and beyond are making difficult spending decisions forced by the growing gap between patient demand and available budget. Historically the ‘experts’ have decided how to prioritise resources. The public may well have different value judgements and priorities. The importance of the patient and public voice in healthcare planning and policy making would seem to be more important than ever. The best answer I can give to my own question — whether to participate in public consultation — is a thundering ‘yes’. but I advise scrutinising the terms of engagement that will direct the consultation.
David Bennett is a medical communications consultant and public representative
Sources
1. Graham Donald, patient representative on the Steering Group of the Blood Transfusion and Blood Donation James Lind Alliance Priority Setting Partnership. http://www.jla.nihr.ac.uk/priority-setting-partnerships/blood-transfusion-and-blood-donation/downloads/Blood-Transfusion-and-Blood-Donation-PSP-results-press-release.pdf Accessed 27 April 2018
2. Code of Practice on consultation. HM Government. 2008
