Background
“As a lay member on a guideline I really appreciated the Chair treating me as an equal with an equally valid opinion to the professionals on the committee. I felt my lived experience really added to the whole process”.
-Lay member on a NICE Guideline Committee (GC)
A NICE GC is a multidisciplinary group, supported by a technical team (systematic reviewer, information specialist, health economist). It is an advisory group to NICE and sits independently. As a minimum, a GC comprises:
- healthcare professionals, and for relevant topics, public health or social care practitioners (both specialists in the topic and generalists)
- patients, carers or members of the public.
The role of a GC Chair should be rooted in the cultural norms of an organisation in terms of its identity and the methodological approaches it takes to guideline development. The wider legislative and policy framework within which the guideline agency operates is also relevant to the Chair’s role. For example, legislative and policy imperatives to promote equality. NICE’s GC Chairs are responsible for running independent groups, but knowledge of the methodological and process expectations of NICE is crucial in ensuring the Chairs can run a group effectively.
Chairs must focus on delivering against NICE’s strategic objective, which is to produce useful and usable guidance for our end users, that is high-quality and up to date. If a guideline developer has yet to establish explicit methods and processes, the Chair should apply core principles that are recognised as key to good quality guideline development (such as the AGREE II criteria [Brouwers et al. 2010]).
We strongly believe that the underlying philosophy of involving patients and the public in guideline development is important. It may well support guidance development organisations when convening such groups, and in chairing them in a facilitative and inclusive manner.
We elicited feedback from colleagues belonging to member organisations of the GIN Public Working Group, for insights into their training and support for committee Chairs. Their input is woven into the relevant sections of this update.
- The importance of the role of a Chair for involving lay members
Reviews carried out by NICE’s People and Communities Team (PaCT; formerly the Public Involvement Programme) identified the role of the Chairs of GCs as crucial to the success of the way the GCs function and how well GC lay members feel integrated into the group and its workings.
Generally, GC lay members have variously described characteristics of ‘good’ Chairs as:
- ‘inclusive’
- ‘skilled’
- open’
- ‘honest’
- ‘able to influence’
- encouraging healthy rivalry’.
One GC member who was a patient, shared some feedback on the qualities that made their Chair especially effective:
“A NICE guideline Chair needs to be fully conversant in the issues that are likely to arise during the committee decision making process, thus they must not only be well versed in the NICE guideline processes but must also have done extensive background reading on the specifics of the condition their guideline will address. As a patient member of a NICE committee, I liked how our Chair was able to keep a running list of those who had asked to speak, thus I always knew my turn would come around before we moved on. He would also frequently double check with lay members for comments so that we were not forgotten, and particularly encourage quieter folk to add to the discussion. “
Another lay member who was on the committee as an unpaid carer, shared the following, to illustrate the various dynamics that can play out, as well as the skill of the Chair in managing those dynamics:
“As a carer, I had concerns that not only would I need to work extra hard to keep up with and contribute to discussions with professional healthcare colleagues, but that my lay peers with lived experience of the condition would be more knowledgeable, able to contribute better, and be given more airtime. I worried that my contributions might be considered of minimal value. My Chair, from the outset, put those fears to rest. He ensured inclusivity of everyone on the guideline committee. He worked hard to make sure that he (and everyone else) understood points being made, and reasoning. The feeling of being valued and included at all times, even in technical and medical discussions, resulted in a positive and enjoyable experience”
It is also important that Chairs acknowledge the importance of involving lay members.
One experienced Chair has commented: “Charing a guideline committee is always a fascinating experience but can be tricky at times when balancing competing views and interpretations of the evidence, especially when it is poor or contradictory. Having lay members is essential. They bring a very different perspective grounded in their personal experiences and can sometimes helpfully challenge the settled views of clinical experts. But it is important that they are supported to be genuinely engaged in the process and to really understand the sometimes complex evidence that is presented.”
The overall positive impact on a final guideline of lay members who feel equally included, heard and respected cannot be overstated.
In May 2006, the World Health Organization (WHO) conducted a review of NICE’s guidelines development programme (de Joncheere et al. 2006) and made several recommendations. One recommendation was that Chairs of GCs should be recruited through a standard process, preferably through open advertising, and that NICE should develop standardised training for GC Chairs. The first of these recommendations was quickly adopted. NICE also developed an ‘induction’ programme, discussed more fully in the section on NICE’s chairs’ induction programme.
NICE recruits external independent Chairs whereas other agencies may recruit skilled moderators from the agency’s staff or well-known topic experts. This section details NICE’s approach to recruiting Chairs. For many years, NICE has had a policy of not recruiting topic experts to chair GCs. Topic expertise is not essential in a Chair as that comes from other members of the GC. In fact, having a Chair with topic expertise may be a risk because they will inevitably have biases and competing interests which may prevent an impartial assessment of the evidence, and given their perceived power and authority, they may be allowed to impose their own views.
To ensure transparency, NICE adopts an open recruitment process, whereby anyone with an interest can apply to chair a group. NICE’s appointments to advisory bodies policy and practice, a corporate recruitment policy, has been developed to support this (2020). Potential chairs must submit an application (as they would for a position of employment), and then a formal process for selection and recruitment follows. Applicants are assessed against criteria in a ‘role description’, and then short-listed. Short-listed candidates are interviewed by a panel comprising senior staff members and a member of the NICE Board. Further information on vacancies for Chairs of NICE groups can be found on NICE’s join a committee webpage. GC Cairs are most often health or social care professionals with extensive commitments, although NICE has experience of recruiting lay people to chair its committees.
This process, although transparent, carries a significant administrative burden, for drafting recruitment paperwork, short-listing the applicants, and the interview process itself. But, because this follows a standardised process, after the template recruitment documents have been developed, they only require minor amendments to tailor them to each new recruitment.
- NICE’s Chairs’ induction programme
4.1 Background to the Chairs’ induction programme
Because of the WHO report and the subsequent reviews, a programme for inducting GC Chairs was developed jointly by NICE’s Centre for Guidelines and the People and Communities Team at NICE. It was specifically tailored to NICE’s needs and the context in which it works.
NICE develops and updates its guidance according to methods and processes set out in the publicly-available NICE guidelines manual. A new Chair is recruited for each GC addressing each new guideline topic but some Chairs are recruited to a broad topic area, such as diabetes, obstetrics, weight management. NICE invites both newly recruited GC Chairs and Chairs from these topic areas to attend induction sessions with their peers. The induction process for NICE’s GC Chairs is regularly reviewed and refined, reflecting the accumulated experience of GCs, their Chairs and members, and, importantly, changes in the guideline development methods and processes.
4.2 The importance of training Chairs in involving lay members
At NICE, the Chair’s role in supporting lay members of the GC is part of the overall induction programme, and discussion of this is woven into all the sessions. Evaluations from the People and Communities Team at NICE revealed that lay members felt that the Chairs could either be ‘weak’ or ‘skilled’. This perception depended on how well they managed their guideline group and how well they offered appropriate support to the lay members of the group.
As found in studies of other kinds of small group work (such as in Elwyn et al. 2001), the PaCT’s evaluations found a relationship between the skills of the Chair and the success of the group. The Chair is clearly a key element determining how well a GC functions.
Success, or otherwise, of a group, rests on the skills of the chair. Additionally, pre- and post-meeting feedback for lay members, especially from the Chair, is instrumental in optimising patient and public members’ participation, confidence and sense of parity.
This emphasises that lay member involvement is an integral part of the guideline development process and of the work of the GC. If there were a separate section of the induction programme, specifically focusing on patient/public involvement, there is a risk that patient/public involvement might be seen an ‘added extra’ in the work of the GC and not an integral and essential part of the process.
4.3 An overview of the Chairs’ induction programme
The day-long face to face programme previously comprised a mix of presentations, discussions and interactive sessions, intended to introduce Chairs to the NICE guideline development methods (NICE 2014). During the COVID-19 pandemic this was reduced to a half-day videoconference session with some of the training material sent out in advance. The virtual session continues to cover practical issues related to running GCs, such as declaring and managing interests (NICE 2021), good facilitation skills, the importance of NICE’s duties under equalities legislation (see the NICE equality scheme), and the NICE policy on participation of lay members of GCs.
Presentation slides from the PaCT team are now sent in advance of the online training with a request for new Chairs to review them and bring questions or points for discussion to the half day training. The session has taken on a more flexible structure with more time spent on discussions with at least one experienced, non-specialist Chair- who discusses their experience and offers tips and strategies for effectively chairing a GC in the NICE context. It also includes input from lay members as well as the NICE staff member who leads on the organisation of this training. Lay members are briefed beforehand; they’re asked to bring insights and examples reinforcing the importance of an inclusive approach to guideline development and the crucial role of the Chair.
NICE’s key staff member who leads on the co-ordination of this induction said, “Our new Chairs’ induction sessions are a great opportunity to engage with and support our guideline committee leaders. Having contributions from the PaCT team and a lay member from a past guideline involved in this training enables the Chairs to understand, in a practical sense, the value of this voice in augmenting the published research evidence on a topic. The input from the team and the individuals they identify to attend these sessions is hugely important in providing a depth to our discussions.”
Because chairing a NICE guideline requires specific knowledge and skills and may be a new experience even to those used to chairing other work-related committees, all new Chairs are encouraged to attend before they take up the role. Overall objectives of the session – whether face to face or virtual- are to:
- provide a specific opportunity for GC Chairs and NICE staff to meet, share experiences and discuss the work of NICE in context
- provide an overview of key NICE processes and methods
- identify key resources and support.
The format is flexible and interactive, with structured presentations designed both to inform and to act as the basis for discussion. The session gives Chairs the opportunity to work collaboratively with their peers, as well as with the guideline development professionals from NICE.
- Feedback about the induction programme
We sought feedback from lay members who participated in this new model of training. One said, “The open conversation with a new Chair, with the opportunity to influence their perspective of lay members, and how to reap the enormous benefit of lived experience, felt constructive, well received, and was an enjoyable task.”
However, more than one lay member mentioned that the interaction would have felt richer had it been in-person; while recognising the ways in which being online is more accessible, especially for those with complex health conditions or mobility issues.
- Chairs’ Training provided by other guideline developer centres
The Centre in Ireland for Clinical guideline support and Evidence Reviews (CICER) produce evidence reviews and provide methodological support for the development of National Clinical Guidelines in Ireland. They shared the ways in which they especially support lay members through training for staff including Chairs of committees. As part of methodological support, they provide formal training to guideline development groups, as well as informal support to the guideline chair and the guideline project manager.
CICER stated: “Some of the key PPI related advice we offer to the guideline Chair and project manager at the start of the process includes recruiting two PPI members, as having more than one person responsible for the PPI contribution helps balance the discussion and avoids one individual being solely responsible for this input. We also advise that PPI members are given the opportunity to meet the chair or project manager at the beginning of the process before any initial meetings, to discuss any issues or additional requirements they may have. For example, we have worked with patient representatives in the past that suffered from ‘brain fog’ where they found it at times difficult to process discussions during the meeting; to facilitate them, the group introduced opportunities to provide feedback after meetings instead.”
SIGN (The Scottish Intercollegiate Guidelines Network) told us they also provide their Chairs with comprehensive guides including practical tips to ensure effective involvement of people with lived experience. This covers every stage of guideline development and pays special attention to group dynamics, clear communication and support mechanisms. All of this ensures decision making that is inclusive and transparent, while being especially mindful of participants who may need additional rest or support. Their post-meeting feedback especially includes positive feedback for valuable contributions; something that lay members at NICE also tell us is vital to their sense of impact and purpose.
- Advantages of virtual/online training for Chairs
Since the COVID-19 pandemic, many organisations have incorporated virtual or hybrid meetings into the guideline development process. One universal advantage of moving meetings online has been increased accessibility, especially for those living with health conditions, caring responsibilities or other factors that make physical travel a barrier.
In the context of our Chairs training, it has meant that the additional and invaluable input from lay members has been possible including from those living with debilitating conditions like ME/CFS(Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). It has allowed greater flexibility as all participants are able to fit the training into other commitments by eliminating the need for travel time. However, more than one lay member at Chairs training commented that it would have been a richer experience for all, had the training been in-person, even in its condensed, 2-hour format.
Conclusion
Chairs play an important role in facilitating and involving lay member input during guideline development. However, recruiting and training Chairs in the importance and methods of involving patients and the public is important to ensure impactful involvement. Providing training adds value to committee working and to the experience of the lay member, which undeniably has a positive effect on the final guideline.
Additional resources
General information about the role of Chairs in running groups on which patient/public members sit can be found in 2 key additional resources:
Other useful information to support the chair’s role on guideline development groups:
Resource and planning requirements
Inducting and supporting GC Chairs needs to be planned and sufficient resources allocated. Some of these are financial, but the most significant is the staff time to deliver the induction and provide ongoing support.
Organisation of induction
Given the large number of guidelines that NICE develops at any one time, it can be difficult to identify suitable times and dates for induction sessions. NICE has therefore appointed a dedicated person within the Centre for Guidelines to lead and coordinate the chairs’ induction.
Financial commitment
At NICE, either the Chair’s employing organisation is re-imbursed or payment is made directly to the Chair for each GC meeting. In addition, travel and subsistence expenses are covered, according to NICE’s non-staff reimbursement policy. It is a requirement for all GC Chairs to attend the induction session (see section 3.7 of NICE’s guidelines manual 2014). NICE does not provide remuneration for attending the induction, but other agencies might consider it worth doing to encourage attendance.