Art & science guidance development
Nurses’ involvement in developing NICE guidelines Rapu C, Matthews VL (2014) Nurse involvement in developing NICE guidelines. Nursing Standard. 28, 52, 42-48. Date of submission: June 11 2013; date of acceptance: March 25 2014.
Abstract This article discusses the development of National Institute for Health and Care Excellence guidelines, the contribution made by nurses to the guidelines and the importance of continuing to take an active role in this work. The challenges nurses face and the support provided to nurses involved in this work by the Royal College of Nursing are outlined. It is intended the article will stimulate interest and encourage nurses to contribute to guideline development.
Authors Caroline Rapu Acting standards manager, Royal College of Nursing, London. Victoria Louise Matthews Retired, multiple sclerosis specialist nurse. Correspondence to: [email protected]
Keywords National Institute for Health and Care Excellence, NICE, NICE guideline development, nurse involvement, nursing role, Royal College of Nursing
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: rcnpublishing.com/r/author-guidelines
THE NATIONAL INSTITUTE for Health and Care Excellence (NICE) was set up as the National Institute for Clinical Excellence in April 1999 to develop clinical guidelines and technology appraisal guidance for the NHS, and its remit has grown since then. In 2005, NICE merged with the Health Development Agency (HDA) and began developing public health guidance. In April 2013, NICE became a statutory body with responsibility for developing social care standards as well as providing guidance and quality standards for health care. NICE guidelines apply formally in England. Decisions on
how they are used in Wales and Northern Ireland are made by the respective devolved institutions. Scottish Intercollegiate Guidelines Network (SIGN) guidelines and Scottish Medicines Consortium (SMC) guidance apply in Scotland, and by special arrangement, some NICE guidelines apply there too. NICE also provides performance metrics: the Quality and Outcomes Framework (QOF) and the Clinical Commissioning Group Outcome Indicator Set (CCGOIS). NICE commissions and provides access to a range of information services to support health and social care professionals including: NICE Evidence Search, a search engine for evidence in health and social care, the British National Formulary, and medicines and prescribing support information. NICE aims to ensure everyone has equal access to medical treatments and receives high quality care from the NHS. NICE (2012a) guidelines and quality standards are independent and authoritative, and aim to ensure quality and value for money in the care of people in NHS settings or NHS-commissioned care. NICE describes its guidelines as evidence-based recommendations for topics ranging from preventing and managing specific conditions, and managing medicines, to providing social care and planning services for improving health. The NICE quality standards are concise statements designed to drive and measure priority quality improvements in a particular area of care in England. NICE guidance work programmes include clinical guidelines, public health guidance, health technology appraisals, interventional procedures, prescribing support, evaluation of medical technologies and diagnostic procedures. Since the inception of NICE, nurses have been involved in the development of guidance for use in the NHS. In the context of this article, nurses include midwives and health visitors.
Development of NICE guidelines Efforts are being made to improve patient care and evidence-based guidance is one way to do this (Grol 2010). NICE guidelines are developed with methodological rigour using the Appraisal of Guidelines for Research and Evaluation
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(AGREE II) instrument (NICE 2012a). AGREE II provides a framework for assessing the quality of clinical practice guidelines. National collaborating centres (NCCs) and independent academic institutions are commissioned by NICE to develop clinical guidelines and assess technology appraisals, respectively. NICE develops short clinical guidelines that contain advice on what works best at any given point in a care pathway (NICE 2012a). The technical teams at NICE and the NCCs source evidence from published data on clinical trials, systematic reviews and other sources. However, evidence is often limited and there is always a need for contributions from primary sources, for example nurses, other healthcare professionals, patients and manufacturers. There are several stages to the process of developing guidelines. First, scoping the topic determines what the guideline should cover. Second, identifying and assessing evidence involves sifting through available evidence, often systematic reviews, to identify what is relevant to the question the guideline aims to answer. Third, translating evidence into a guideline involves synthesising, discussing and using the evidence to develop recommendations that will form the guideline. Finally, validating and publishing the guideline involves scrutinising the draft recommendations for accuracy, validity and clarity and users giving their views on the implementation of the guideline. The end result is the publication of the guideline for use in the NHS and NHS-funded care. It is recognised that guidelines cannot be based on research evidence alone. Social value judgements (NICE 2008) and subjective assessments of the evidence, its relevance to patients and settings (Raine et al 2005) and its application in clinical practice can influence the development of the guideline. Nurses can contribute to these discussions through their experience of caring for people with various conditions. Nurses, as well as other national professional organisations, national patient and/or care organisations and manufacturers are involved in each developmental stage of the guideline. In addition, NHS trusts are randomly selected to participate in the development of the guideline. NICE provides guidelines for developers using the formal consensus method to make it possible to trace how guideline development groups reach a decision, in an explicit and transparent manner (NICE 2012a).
professionals in the NHS (NHS Careers 2014), are involved in guideline development to ensure the guideline is in line with current clinical practice, is evidence based and can be implemented effectively. Nurses’ input is sought for all NICE work programmes. The Royal College of Nursing (RCN) actively seeks nurses from its membership to participate. A dedicated team at the RCN leads on this, and the NICE consultation gateway on the RCN website contains information on the process and how nurses can become involved (RCN 2012a). Nurses contribute in many ways. By using their critical appraisal and analytical skills, nurses review and comment on draft documents, submit evidence and suggest clinical questions. NICE invites national professional bodies including the RCN to review the consultation documents. RCN members are kept up to date on NICE work programmes and are invited to participate as guideline development group members or reviewers of consultation documents. Their comments to the RCN inform responses to NICE. NICE encourages this process, and considers these contributions a vital part of the quality assurance and peer review process of the guidance (Ilott et al 2004). Nurses are selected as members of guideline development groups or invited as expert advisers to NICE committees to give personal perspectives on the management of a condition or use of a health technology or procedure that is being considered. Recruitment to these groups and committees is sought through public advertisements and direct requests to organisations. These recruitment calls are circulated to relevant networks in the RCN, encouraging nurses with interest and expertise to apply. Of the 18 clinical guidelines published by NICE in 2012, 40 nursing professionals were members of development groups. Nurses’ input to these groups ensures the nursing perspective is considered and the clinical implications and/or effect of the condition are given a more holistic view. Expert professional input is indispensible and is welcomed by NICE. This is evident in a NICE-commissioned report about the involvement of relevant professional bodies, which reflects NICE’s principle of developing guidelines in a ‘transparent and collaborative manner’ (Ilott et al 2004).
Importance of the nursing input Nurses use NICE guidelines and are involved in
Nurse involvement in guideline development almost all clinical pathways in which the guidelines NICE uses specialists who provide knowledge and advice to guidance developers (Campbell 2011). It is crucial that nurses, as the largest group of healthcare
apply. Campbell (2011) emphasised that clinical specialists’ input is important and their advice can be hugely influential, particularly insights on the
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Art & science guidance development use, training, context and place of the interventions as well as the patient’s preferences and effects on related services, which may not be covered in the literature. The clinical experience nurses bring is important and enables guideline developers to have a more informed view of the effect of their proposals, although nurses are selected on their own merit and do not necessarily represent any particular organisation (NICE 2012a). Nursing’s contribution in the development of the guidelines enables professionals to make informed decisions. Principle D of the Principles of Nursing Practice (RCN 2011) is explicit on patient, carer and/or service user expectations of nurses in terms of making informed decisions and helping patients and/or carers to make informed choices about their treatment and care.
Effectiveness of nurses’ contributions Nurses engage actively in NICE work programmes, from formation stage to the implementation of the guideline. NICE has published more than 900 items of guidance to date and more than 2,000 nurses have been involved in the work programme on behalf of the RCN (2012a). In Box 1, multiple sclerosis specialist nurse Vicki Matthews shares her experience of participating in a NICE single technology appraisal in August 2012 on behalf of the RCN. Nurses can contribute significantly to the development of NICE guidelines in terms of their clinical, care pathway and research knowledge.
Clinical knowledge
Nurses bring clinical experience and knowledge to the development groups. For example, they comment on the practicality of implementing proposed recommendations when reviewing a draft guideline, and this is important during initial discussions when the guideline is being developed because their input helps to mould the proposed outcome. The importance of their involvement at this stage is apparent in the feedback from nurses who have been involved in guideline development groups, published stories of their involvement and how they have implemented the guidelines (RCN 2012a). By sharing experiences, others may feel encouraged to participate in this activity, which is aimed at improving the quality of care (Barker 2012). This helps to improve clinical practice.
Care pathway knowledge
Nurses’ expert knowledge and experience are invaluable in informing guideline development. For example, as members of guideline development groups, they network with peers and colleagues in the multidisciplinary team, obtaining and sharing information pertinent to their work while informing
the development of the guideline. Past guideline development group members are often invited to promote and act as champions of the guideline, for example speaking at conferences and publishing articles relating to the guideline (RCN 2012a). They also link to professional networks, sharing relevant information to support implementation, and encourage others to become involved.
Research knowledge
Nurses develop and use research skills while reviewing consultation documents. They support the evidence base by researching, submitting and citing grey literature that could inform the development of the guideline. These unpublished works include relevant local or national audits or unpublished clinical trials. These complement the evidence that NICE’s technical team can obtain through systematic reviews. Nurses are often aware of variations in practice through intelligence from their networks. Through involvement in guideline development, they continue to enhance their professional development and gain skills that enable them to understand and apply the latest research evidence (Gordon and Watts 2011, RCN 2012a).
Benefits for nurses and nursing Involvement in guideline work provides benefits for nurses and nursing. These include the wider benefit of improving clinical practice and personal benefit for those who are actively involved, as well as gaining new skills, professional and personal development, acknowledgement and recognition of their involvement. These benefits are gained from direct involvement with NICE and by taking part in peer review of consultation documents via the RCN, and on some occasions working collaboratively with other partner organisations. Benefits include the formation of a network of experts, collaboration with partner organisations and continuing professional development (CPD).
Network of experts
In developing guidelines, a group of experts work together to develop and peer review the draft documents. This has enabled the formation of a network of experts. The RCN has access to expert members who have been involved in NICE work. These experts can act as NICE champions for the guidelines in which they were involved as well as offering to be buddies to those new to guideline work. They are often asked to participate in further guideline work to review, update and/or develop associated guidelines and quality standards. They are informed and knowledgeable in their areas of
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expertise and give expert opinion on relevant issues. NICE, the RCN and other partner organisations tap into this resource by involving these experts in a range of activities, such as speaking engagements and other implementation support work, to improve quality of care.
Collaboration
Collaboration is essential to ensure that guidelines are relevant and effective (Grol 2010). NICE (2012a) encourages joint submissions and partner organisations can collaborate to contribute, influence, challenge and implement guidelines. To collaborate, organisations need to confirm their joint submission in writing to the guideline developer and agree ways of working and sign-off. This type of partnership can be beneficial because both parties can pool resources and ideas and support each other when putting forward their views. In the past, the RCN worked with the Alzheimer’s Society and National Rheumatology Arthritis Society (NRAS) to contribute to and challenge draft recommendations from NICE. The value of collaborative working is evident in groups, such as Patients Involved in NICE, which allow the sharing of information and mutual support while acting as a ‘critical friend’ to NICE (Multiple Sclerosis Society 2011).
Continuing professional development
Nurses continue their professional development through collaborating, researching and sharing knowledge. CPD is associated with providing high quality care and retaining staff (Willis Commission on Nursing Education 2012). Employers also benefit from nurses’ participation. The skills and knowledge that participants gain from being involved are transferable and can be used in the workplace. The value of such sharing is evident in case studies available on the NICE (2012b) learning database. Involvement in guideline development gives nurses an opportunity to enhance their career development because the skills gained, for example performing critical appraisals, researching and networking, are transferable. Other opportunities, including fellowships, scholarships and becoming NICE champions, are available for nurses to support career development. Lord Willis, in his report on education and training of nurses, recommends that health service providers must support nurse education and training (Willis Commission on Nursing Education 2012). With the squeeze on NHS training budgets (Lintern 2012), involvement in guideline development offers a good opportunity to support practice through implementation.
BOX 1 One nurse’s experience of participating in a NICE single technology appraisal ‘As I walked towards the NICE offices in London it suddenly seemed a long way from my familiar role as multiple sclerosis (MS) specialist nurse, member of the Royal College of Nursing neuroscience forum and adviser to the MS Trust. I was attending a NICE single technology appraisal (STA) as a clinical expert on behalf of the RCN and what seemed a good idea some time back was starting to feel rather daunting. I felt nervous and apprehensive, but curious too as this was a new experience for me. ‘I arrived early and was politely directed to a large waiting area for those who were participating in the appraisal. I noticed I was not the only one who was displaying signs of nervousness in the room and we shared the usual pleasantries that help to normalise a situation. It was ‘a first time’ for several of us. There was a separate area for those stakeholders, members of the public and press who were attending but not participating and for a brief moment I envied them their anonymity. ‘The committee assembled themselves ahead of us all and we were then called in to take our named places around a very large table. I was feeling really nervous at this point. The other clinical expert, a professor of neurology, sat next to me and also confessed to a feeling of anxiety at being confronted by such a distinguished group across the table. The committee members, from a wide range of disciplines and specialties, welcomed us warmly and made us feel, from the outset, that we were essential to the process and our specialist expertise was very much valued by them. After introductions the process began. ‘As a clinical expert you are required to give comment and information – when asked and where you are able to do so – on the evidence presented to the STA committee. Presentations were complex, in-depth and wideranging. The information covered a spectrum of submitted public opinion and anecdote, through to health science and health economic research. The committee looked to us to provide confirmation of current practice and give objective, balanced opinion and additional insights into MS. The process took a whole morning followed by an invitation to informal lunch and further discussion. ‘I have reflected on this experience; the enormous value and contribution that nursing has to make to the ‘bigger picture’ can be obscured by other players who have been, or are, considered more powerful. My anxiety about the value of my contribution at this NICE STA is the result of repeated early experiences of feeling nursing was not a significant voice in the decision-making process of an NHS organisation, that nursing could only be visible in spaces defined by others and that it was often relegated, marginalised and even invisible elsewhere. ‘Being “invited” and welcomed so warmly into a space occupied by influential others who were transparent and genuine in their desire to gain from my knowledge and experience was so good. I gained such insight into how decisions are made at the very highest level and learned how valuable, and valued, the nursing voice can be. ‘I learned that the ability to inform and influence policymakers effectively is a role a nurse on the front line can undertake. But to do it well I learned that the nurse needs to be skilled yet compassionate, caring at the bedside but articulate in the boardroom and have inner belief built on a strong foundation of knowledge and clinical expertise. ‘I was uncertain of the expectations NICE would have of me. I wanted to be the best for all those who were not able to be in the room and to ensure that when nursing is at the top table it has the power to influence and be a key player. I learned it can be done.’
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Art & science guidance development Challenges to guideline development There are challenges to effective participation in guideline development. Guideline development requires human and financial resources. It is important to overcome and/or limit any barriers that may impede development to enable active and effective participation. Those involved in developing guidelines may encounter several challenges, for example finding the relevant nursing expertise, maintaining effective group dynamics, and ensuring participants have the necessary analytical and critical appraisal skills. Other challenges that require consideration are the time commitment required, competing interests and negative recommendation.
Relevant nursing expertise
There is a constant demand to find relevant nursing expertise to contribute to NICE guideline development work. It can be challenging to find the right expertise at the right time to contribute in the time frame, particularly in the case of rare conditions or new drugs. Many senior nurses in various fields of practice participate in the development of guidelines; however, the frequency and the breadth of work requires regular and wide-ranging involvement. Because of the nature of their work and busy schedules, nurses often need to juggle priorities to dedicate specific time for guideline work. This can be a challenge and some experts decline this important work because of more pressing priorities.
Group dynamics
It is essential that each guideline development group member has the skills and ability to interact effectively with a multidisciplinary team. Each participant in the group is responsible for providing professional and/or personal perspectives. Decisions are often made using consensus methods in guideline development groups (Raine et al 2005, NICE 2012a). It is important all group participants recognise the challenges that can arise when dealing with wide and sometimes dissenting views and value judgements where consensus at group meetings is required. In a consensus mode, decisions are collective, even if a group member does not agree with what has been agreed. Group members should be objective and able to articulate their points of view with the knowledge and understanding that the decisions will be made in the wider context of limited NHS resources. Not all groups will run smoothly, and sometimes there are tensions between group members or situations in which not everyone will be objective. Ineffective chairing could affect the ability of the group and its members to participate effectively during meetings, make valuable contributions and/or come to a consensus. It may
be a daunting experience for some individuals who are new to this way of working, and some may feel impeded or think that their influence on the group could be less important than that of other senior professionals, especially if they do not feel confident to challenge points when they know that, if those points are agreed, the recommendation may not be in line with effective clinical practice. This ineffective participation can affect any individual irrespective of profession. NICE recognises that each guideline development group functions in different ways to suit its membership, and is not prescriptive about the method used. NICE (2012a) specifies that all group members are equally important and should contribute equally, and provides training for chairs and new group members.
Analytical skills
It is important participants have the analytical and critical appraisal skills to review and contribute to NICE documents. Some of the documents are set out in technical jargon that may not be encountered in everyday practice. Group members, lay and professional members alike, need to understand these terms and the context in which they are used to be able to participate effectively. It is therefore important to allocate time to undertake effective review of these documents. NICE provides training for all new group members, covering governance issues, critical appraisal and use of research knowledge, including a glossary of unfamiliar terms. SIGN 50: A Guideline Developer’s Handbook is also a useful resource for developers and participants (SIGN 2011).
Time commitment
Guideline development is time-consuming (Grol 2010). Development time for NICE guidelines ranges between 12 and 24 months depending on the type of guideline. Group members are required to attend regular meetings in London or Manchester, where NICE offices are located, for the duration of the development. Group members help to write the guidelines, review pre-consultation documents, and launch and promote published guidelines. Those contributing as reviewers need to set time aside to critically review the documents within tight deadlines and provide relevant clinical evidence and advice. Sometimes it is challenging to find nurses available to commit to being members of the development group for this length of time. Those working in the NHS are required to give at least six weeks’ notice to cancel clinics or find cover for their absence. There is no payment for participation but travel expenses and subsistence incurred for attending the meetings are reimbursed. Although
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this is not peculiar to nurses, it is challenging for nurses working as independent consultants who may experience loss of earnings. Employers’ support is necessary for nurses to commit to this length of time working in guideline development groups.
Competing interests
Guideline recommendations may be biased as a result of vested interests, local influence and personal opinions of the developers (Grol 2010). The challenge is being able to determine what these interests may be, how those interests could be perceived by others who come to know about them and whether these should preclude them from participating in the development of the guideline. NICE requires participants to contribute in an objective and transparent way and to state and acknowledge any possible conflict of interest by declaring these interests and signing a confidentiality agreement. It is important to declare competing interests, for example personal, family interest or pecuniary interest such as vested interests with pharmaceutical companies, or membership of advisory boards of competing or related companies. NICE keeps a register of interests and provides training for group members to clarify expectations and ways of working.
NICE negative recommendation
There are occasions when NICE does not recommend a certain treatment, contrary to the views of clinical specialists. This may be because evidence shows that, on balance, the treatment is not beneficial. A negative recommendation is defined as a decision ‘not to recommend’ or ‘do not do’. NICE makes decisions based on the technology appraisal of clinical effectiveness and cost-effectiveness of the drug. One may override the other having taken into account all other opportunity costs. Because there is limited funding, it can be challenging to balance patients’ needs for a particular drug with the wider societal benefit. Some healthcare professionals may feel such a decision could jeopardise the patient’s interests, particularly when they know the treatment to be effective. The challenge can sometimes be the ability to bring objectivity to deliberations. NICE consultees have the opportunity to appeal against draft recommendations that NICE makes. An independent appeal panel at NICE hears the appeal considering the views of the appellant – the consultee making the appeal – and that of the appraisal committee that made the original recommendation to determine if due processes were followed. An appeal can be made if:
NICE failed to act fairly. NICE formulated guidance that cannot reasonably be justified in light of the evidence submitted. NICE exceeded its powers. Appeals are not opportunities to rehash discussions because one does not agree with the recommendations.
Role of the Royal College of Nursing Since the establishment of NICE, the RCN has been involved in guideline development. The RCN has a well established system and process for engaging its members. The Standards, Knowledge and Information Services of the nursing department is responsible for managing the RCN’s involvement in NICE work programmes. This RCN team is the conduit between NICE and the RCN and actively seeks and ensures nursing input at each stage of guidance development. RCN members from various professional forums and networks are targeted and invited to participate appropriate to their expertise. RCN members’ responses are collated and inform the college’s responses to NICE. The responses are considered at relevant NICE committees and NICE responds to them formally. Information relating to the various topics is published by the RCN and in online community pages to raise awareness of the RCN’s involvement. Equally, the completed guideline is publicised through the same networks and online communities. Relevant articles profile the RCN’s involvement with NICE (Rapu 2005, 2007). The NICE Consultation Gateway pages (RCN 2012b) on the RCN website are good sources of information for current NICE consultations and how nurses can get involved. The RCN (2012b) offers support to members who wish to be involved in guideline development. Learning and development opportunities in the form of training and/or workshops covering critical appraisal and group dynamics, and an overview of understanding evidence-based practice, project management and equality and diversity in guideline development, are provided. The aim is to prepare and support nurses in relation to understanding the quality and usefulness of the research they will encounter and presenting this to guideline development group meetings and when reviewing consultation documents. The RCN also offers one-to-one support to those applying for guideline development membership if they need it. Each year, a member is sponsored to attend the NICE annual conference. The RCN developed a resource on its ‘learning zone’ based on the NICE (2010) guidance on
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Art & science guidance development venous thromboembolism (VTE), which won a commendation at the NICE Shared Learning Awards (NICE 2012b, 2014a). The award is a good source of implementation stories and case studies of involvement in and use of the NICE guidelines. The RCN has challenged some NICE recommendations by appealing against the final appraisal determination, the final recommendation of NICE about the use of a drug. The RCN older people’s forum in collaboration with the Alzheimer’s Society appealed and lobbied against a determination that contained ‘do not recommend’ decisions on drugs used to treat people with Alzheimer’s disease. The appeal process presents a balanced and independent opportunity for consultees to challenge NICE’s decisions. It is not a rehash of the argument, but an opportunity to challenge NICE when it has not acted fairly, construed a guidance that cannot be reasonably justified in the light of evidence it considered or acted outside its remit (NICE 2014b). Even though the outcome of appeals may not always be positive, it is a step that enables consultees to use the check and balance process of governance in guideline development.
Conclusion Evidence-based practice is vital for ensuring high quality patient care. NICE guidelines are effective contributors to the quality of practice and care. RCN support for NICE guideline development is evident in its active participation and support for nurse involvement. Nurses continue to be actively involved in the development of guidelines, providing the nursing perspective. It is vital that nurses continue to engage in this work and that nursing input is actively sought and secured. Effective practices and tools need to be in place to continue to encourage this. The RCN encourages and supports nurses to participate, and with guideline developers and employers, needs to ensure that the nurse’s role continues and is strengthened. The involvement of nurses will support effective implementation of NICE guidelines and ensure quality care. It is important that guideline developers and professional organisations continue to support healthcare professionals, in this case nursing staff, to engage actively in this work. It is also important that employers recognise the value of the input by supporting nurses who wish to participate in guideline development NS
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Nurses’ involvement in developing NICE guidelines Rapu C, Matthews VL (2014) Nurse involvement in developing NICE guidelines. Nursing Standard. 28, 52, 42-48. Date of submission: June 11 2013; date of acceptance: March 25 2014.
Abstract This article discusses the development of National Institute for Health and Care Excellence guidelines, the contribution made by nurses to the guidelines and the importance of continuing to take an active role in this work. The challenges nurses face and the support provided to nurses involved in this work by the Royal College of Nursing are outlined. It is intended the article will stimulate interest and encourage nurses to contribute to guideline development.
Authors Caroline Rapu Acting standards manager, Royal College of Nursing, London. Victoria Louise Matthews Retired, multiple sclerosis specialist nurse. Correspondence to: [email protected]
Keywords National Institute for Health and Care Excellence, NICE, NICE guideline development, nurse involvement, nursing role, Royal College of Nursing
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: rcnpublishing.com/r/author-guidelines
THE NATIONAL INSTITUTE for Health and Care Excellence (NICE) was set up as the National Institute for Clinical Excellence in April 1999 to develop clinical guidelines and technology appraisal guidance for the NHS, and its remit has grown since then. In 2005, NICE merged with the Health Development Agency (HDA) and began developing public health guidance. In April 2013, NICE became a statutory body with responsibility for developing social care standards as well as providing guidance and quality standards for health care. NICE guidelines apply formally in England. Decisions on
how they are used in Wales and Northern Ireland are made by the respective devolved institutions. Scottish Intercollegiate Guidelines Network (SIGN) guidelines and Scottish Medicines Consortium (SMC) guidance apply in Scotland, and by special arrangement, some NICE guidelines apply there too. NICE also provides performance metrics: the Quality and Outcomes Framework (QOF) and the Clinical Commissioning Group Outcome Indicator Set (CCGOIS). NICE commissions and provides access to a range of information services to support health and social care professionals including: NICE Evidence Search, a search engine for evidence in health and social care, the British National Formulary, and medicines and prescribing support information. NICE aims to ensure everyone has equal access to medical treatments and receives high quality care from the NHS. NICE (2012a) guidelines and quality standards are independent and authoritative, and aim to ensure quality and value for money in the care of people in NHS settings or NHS-commissioned care. NICE describes its guidelines as evidence-based recommendations for topics ranging from preventing and managing specific conditions, and managing medicines, to providing social care and planning services for improving health. The NICE quality standards are concise statements designed to drive and measure priority quality improvements in a particular area of care in England. NICE guidance work programmes include clinical guidelines, public health guidance, health technology appraisals, interventional procedures, prescribing support, evaluation of medical technologies and diagnostic procedures. Since the inception of NICE, nurses have been involved in the development of guidance for use in the NHS. In the context of this article, nurses include midwives and health visitors.
Development of NICE guidelines Efforts are being made to improve patient care and evidence-based guidance is one way to do this (Grol 2010). NICE guidelines are developed with methodological rigour using the Appraisal of Guidelines for Research and Evaluation
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(AGREE II) instrument (NICE 2012a). AGREE II provides a framework for assessing the quality of clinical practice guidelines. National collaborating centres (NCCs) and independent academic institutions are commissioned by NICE to develop clinical guidelines and assess technology appraisals, respectively. NICE develops short clinical guidelines that contain advice on what works best at any given point in a care pathway (NICE 2012a). The technical teams at NICE and the NCCs source evidence from published data on clinical trials, systematic reviews and other sources. However, evidence is often limited and there is always a need for contributions from primary sources, for example nurses, other healthcare professionals, patients and manufacturers. There are several stages to the process of developing guidelines. First, scoping the topic determines what the guideline should cover. Second, identifying and assessing evidence involves sifting through available evidence, often systematic reviews, to identify what is relevant to the question the guideline aims to answer. Third, translating evidence into a guideline involves synthesising, discussing and using the evidence to develop recommendations that will form the guideline. Finally, validating and publishing the guideline involves scrutinising the draft recommendations for accuracy, validity and clarity and users giving their views on the implementation of the guideline. The end result is the publication of the guideline for use in the NHS and NHS-funded care. It is recognised that guidelines cannot be based on research evidence alone. Social value judgements (NICE 2008) and subjective assessments of the evidence, its relevance to patients and settings (Raine et al 2005) and its application in clinical practice can influence the development of the guideline. Nurses can contribute to these discussions through their experience of caring for people with various conditions. Nurses, as well as other national professional organisations, national patient and/or care organisations and manufacturers are involved in each developmental stage of the guideline. In addition, NHS trusts are randomly selected to participate in the development of the guideline. NICE provides guidelines for developers using the formal consensus method to make it possible to trace how guideline development groups reach a decision, in an explicit and transparent manner (NICE 2012a).
professionals in the NHS (NHS Careers 2014), are involved in guideline development to ensure the guideline is in line with current clinical practice, is evidence based and can be implemented effectively. Nurses’ input is sought for all NICE work programmes. The Royal College of Nursing (RCN) actively seeks nurses from its membership to participate. A dedicated team at the RCN leads on this, and the NICE consultation gateway on the RCN website contains information on the process and how nurses can become involved (RCN 2012a). Nurses contribute in many ways. By using their critical appraisal and analytical skills, nurses review and comment on draft documents, submit evidence and suggest clinical questions. NICE invites national professional bodies including the RCN to review the consultation documents. RCN members are kept up to date on NICE work programmes and are invited to participate as guideline development group members or reviewers of consultation documents. Their comments to the RCN inform responses to NICE. NICE encourages this process, and considers these contributions a vital part of the quality assurance and peer review process of the guidance (Ilott et al 2004). Nurses are selected as members of guideline development groups or invited as expert advisers to NICE committees to give personal perspectives on the management of a condition or use of a health technology or procedure that is being considered. Recruitment to these groups and committees is sought through public advertisements and direct requests to organisations. These recruitment calls are circulated to relevant networks in the RCN, encouraging nurses with interest and expertise to apply. Of the 18 clinical guidelines published by NICE in 2012, 40 nursing professionals were members of development groups. Nurses’ input to these groups ensures the nursing perspective is considered and the clinical implications and/or effect of the condition are given a more holistic view. Expert professional input is indispensible and is welcomed by NICE. This is evident in a NICE-commissioned report about the involvement of relevant professional bodies, which reflects NICE’s principle of developing guidelines in a ‘transparent and collaborative manner’ (Ilott et al 2004).
Importance of the nursing input Nurses use NICE guidelines and are involved in
Nurse involvement in guideline development almost all clinical pathways in which the guidelines NICE uses specialists who provide knowledge and advice to guidance developers (Campbell 2011). It is crucial that nurses, as the largest group of healthcare
apply. Campbell (2011) emphasised that clinical specialists’ input is important and their advice can be hugely influential, particularly insights on the
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Art & science guidance development use, training, context and place of the interventions as well as the patient’s preferences and effects on related services, which may not be covered in the literature. The clinical experience nurses bring is important and enables guideline developers to have a more informed view of the effect of their proposals, although nurses are selected on their own merit and do not necessarily represent any particular organisation (NICE 2012a). Nursing’s contribution in the development of the guidelines enables professionals to make informed decisions. Principle D of the Principles of Nursing Practice (RCN 2011) is explicit on patient, carer and/or service user expectations of nurses in terms of making informed decisions and helping patients and/or carers to make informed choices about their treatment and care.
Effectiveness of nurses’ contributions Nurses engage actively in NICE work programmes, from formation stage to the implementation of the guideline. NICE has published more than 900 items of guidance to date and more than 2,000 nurses have been involved in the work programme on behalf of the RCN (2012a). In Box 1, multiple sclerosis specialist nurse Vicki Matthews shares her experience of participating in a NICE single technology appraisal in August 2012 on behalf of the RCN. Nurses can contribute significantly to the development of NICE guidelines in terms of their clinical, care pathway and research knowledge.
Clinical knowledge
Nurses bring clinical experience and knowledge to the development groups. For example, they comment on the practicality of implementing proposed recommendations when reviewing a draft guideline, and this is important during initial discussions when the guideline is being developed because their input helps to mould the proposed outcome. The importance of their involvement at this stage is apparent in the feedback from nurses who have been involved in guideline development groups, published stories of their involvement and how they have implemented the guidelines (RCN 2012a). By sharing experiences, others may feel encouraged to participate in this activity, which is aimed at improving the quality of care (Barker 2012). This helps to improve clinical practice.
Care pathway knowledge
Nurses’ expert knowledge and experience are invaluable in informing guideline development. For example, as members of guideline development groups, they network with peers and colleagues in the multidisciplinary team, obtaining and sharing information pertinent to their work while informing
the development of the guideline. Past guideline development group members are often invited to promote and act as champions of the guideline, for example speaking at conferences and publishing articles relating to the guideline (RCN 2012a). They also link to professional networks, sharing relevant information to support implementation, and encourage others to become involved.
Research knowledge
Nurses develop and use research skills while reviewing consultation documents. They support the evidence base by researching, submitting and citing grey literature that could inform the development of the guideline. These unpublished works include relevant local or national audits or unpublished clinical trials. These complement the evidence that NICE’s technical team can obtain through systematic reviews. Nurses are often aware of variations in practice through intelligence from their networks. Through involvement in guideline development, they continue to enhance their professional development and gain skills that enable them to understand and apply the latest research evidence (Gordon and Watts 2011, RCN 2012a).
Benefits for nurses and nursing Involvement in guideline work provides benefits for nurses and nursing. These include the wider benefit of improving clinical practice and personal benefit for those who are actively involved, as well as gaining new skills, professional and personal development, acknowledgement and recognition of their involvement. These benefits are gained from direct involvement with NICE and by taking part in peer review of consultation documents via the RCN, and on some occasions working collaboratively with other partner organisations. Benefits include the formation of a network of experts, collaboration with partner organisations and continuing professional development (CPD).
Network of experts
In developing guidelines, a group of experts work together to develop and peer review the draft documents. This has enabled the formation of a network of experts. The RCN has access to expert members who have been involved in NICE work. These experts can act as NICE champions for the guidelines in which they were involved as well as offering to be buddies to those new to guideline work. They are often asked to participate in further guideline work to review, update and/or develop associated guidelines and quality standards. They are informed and knowledgeable in their areas of
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expertise and give expert opinion on relevant issues. NICE, the RCN and other partner organisations tap into this resource by involving these experts in a range of activities, such as speaking engagements and other implementation support work, to improve quality of care.
Collaboration
Collaboration is essential to ensure that guidelines are relevant and effective (Grol 2010). NICE (2012a) encourages joint submissions and partner organisations can collaborate to contribute, influence, challenge and implement guidelines. To collaborate, organisations need to confirm their joint submission in writing to the guideline developer and agree ways of working and sign-off. This type of partnership can be beneficial because both parties can pool resources and ideas and support each other when putting forward their views. In the past, the RCN worked with the Alzheimer’s Society and National Rheumatology Arthritis Society (NRAS) to contribute to and challenge draft recommendations from NICE. The value of collaborative working is evident in groups, such as Patients Involved in NICE, which allow the sharing of information and mutual support while acting as a ‘critical friend’ to NICE (Multiple Sclerosis Society 2011).
Continuing professional development
Nurses continue their professional development through collaborating, researching and sharing knowledge. CPD is associated with providing high quality care and retaining staff (Willis Commission on Nursing Education 2012). Employers also benefit from nurses’ participation. The skills and knowledge that participants gain from being involved are transferable and can be used in the workplace. The value of such sharing is evident in case studies available on the NICE (2012b) learning database. Involvement in guideline development gives nurses an opportunity to enhance their career development because the skills gained, for example performing critical appraisals, researching and networking, are transferable. Other opportunities, including fellowships, scholarships and becoming NICE champions, are available for nurses to support career development. Lord Willis, in his report on education and training of nurses, recommends that health service providers must support nurse education and training (Willis Commission on Nursing Education 2012). With the squeeze on NHS training budgets (Lintern 2012), involvement in guideline development offers a good opportunity to support practice through implementation.
BOX 1 One nurse’s experience of participating in a NICE single technology appraisal ‘As I walked towards the NICE offices in London it suddenly seemed a long way from my familiar role as multiple sclerosis (MS) specialist nurse, member of the Royal College of Nursing neuroscience forum and adviser to the MS Trust. I was attending a NICE single technology appraisal (STA) as a clinical expert on behalf of the RCN and what seemed a good idea some time back was starting to feel rather daunting. I felt nervous and apprehensive, but curious too as this was a new experience for me. ‘I arrived early and was politely directed to a large waiting area for those who were participating in the appraisal. I noticed I was not the only one who was displaying signs of nervousness in the room and we shared the usual pleasantries that help to normalise a situation. It was ‘a first time’ for several of us. There was a separate area for those stakeholders, members of the public and press who were attending but not participating and for a brief moment I envied them their anonymity. ‘The committee assembled themselves ahead of us all and we were then called in to take our named places around a very large table. I was feeling really nervous at this point. The other clinical expert, a professor of neurology, sat next to me and also confessed to a feeling of anxiety at being confronted by such a distinguished group across the table. The committee members, from a wide range of disciplines and specialties, welcomed us warmly and made us feel, from the outset, that we were essential to the process and our specialist expertise was very much valued by them. After introductions the process began. ‘As a clinical expert you are required to give comment and information – when asked and where you are able to do so – on the evidence presented to the STA committee. Presentations were complex, in-depth and wideranging. The information covered a spectrum of submitted public opinion and anecdote, through to health science and health economic research. The committee looked to us to provide confirmation of current practice and give objective, balanced opinion and additional insights into MS. The process took a whole morning followed by an invitation to informal lunch and further discussion. ‘I have reflected on this experience; the enormous value and contribution that nursing has to make to the ‘bigger picture’ can be obscured by other players who have been, or are, considered more powerful. My anxiety about the value of my contribution at this NICE STA is the result of repeated early experiences of feeling nursing was not a significant voice in the decision-making process of an NHS organisation, that nursing could only be visible in spaces defined by others and that it was often relegated, marginalised and even invisible elsewhere. ‘Being “invited” and welcomed so warmly into a space occupied by influential others who were transparent and genuine in their desire to gain from my knowledge and experience was so good. I gained such insight into how decisions are made at the very highest level and learned how valuable, and valued, the nursing voice can be. ‘I learned that the ability to inform and influence policymakers effectively is a role a nurse on the front line can undertake. But to do it well I learned that the nurse needs to be skilled yet compassionate, caring at the bedside but articulate in the boardroom and have inner belief built on a strong foundation of knowledge and clinical expertise. ‘I was uncertain of the expectations NICE would have of me. I wanted to be the best for all those who were not able to be in the room and to ensure that when nursing is at the top table it has the power to influence and be a key player. I learned it can be done.’
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Art & science guidance development Challenges to guideline development There are challenges to effective participation in guideline development. Guideline development requires human and financial resources. It is important to overcome and/or limit any barriers that may impede development to enable active and effective participation. Those involved in developing guidelines may encounter several challenges, for example finding the relevant nursing expertise, maintaining effective group dynamics, and ensuring participants have the necessary analytical and critical appraisal skills. Other challenges that require consideration are the time commitment required, competing interests and negative recommendation.
Relevant nursing expertise
There is a constant demand to find relevant nursing expertise to contribute to NICE guideline development work. It can be challenging to find the right expertise at the right time to contribute in the time frame, particularly in the case of rare conditions or new drugs. Many senior nurses in various fields of practice participate in the development of guidelines; however, the frequency and the breadth of work requires regular and wide-ranging involvement. Because of the nature of their work and busy schedules, nurses often need to juggle priorities to dedicate specific time for guideline work. This can be a challenge and some experts decline this important work because of more pressing priorities.
Group dynamics
It is essential that each guideline development group member has the skills and ability to interact effectively with a multidisciplinary team. Each participant in the group is responsible for providing professional and/or personal perspectives. Decisions are often made using consensus methods in guideline development groups (Raine et al 2005, NICE 2012a). It is important all group participants recognise the challenges that can arise when dealing with wide and sometimes dissenting views and value judgements where consensus at group meetings is required. In a consensus mode, decisions are collective, even if a group member does not agree with what has been agreed. Group members should be objective and able to articulate their points of view with the knowledge and understanding that the decisions will be made in the wider context of limited NHS resources. Not all groups will run smoothly, and sometimes there are tensions between group members or situations in which not everyone will be objective. Ineffective chairing could affect the ability of the group and its members to participate effectively during meetings, make valuable contributions and/or come to a consensus. It may
be a daunting experience for some individuals who are new to this way of working, and some may feel impeded or think that their influence on the group could be less important than that of other senior professionals, especially if they do not feel confident to challenge points when they know that, if those points are agreed, the recommendation may not be in line with effective clinical practice. This ineffective participation can affect any individual irrespective of profession. NICE recognises that each guideline development group functions in different ways to suit its membership, and is not prescriptive about the method used. NICE (2012a) specifies that all group members are equally important and should contribute equally, and provides training for chairs and new group members.
Analytical skills
It is important participants have the analytical and critical appraisal skills to review and contribute to NICE documents. Some of the documents are set out in technical jargon that may not be encountered in everyday practice. Group members, lay and professional members alike, need to understand these terms and the context in which they are used to be able to participate effectively. It is therefore important to allocate time to undertake effective review of these documents. NICE provides training for all new group members, covering governance issues, critical appraisal and use of research knowledge, including a glossary of unfamiliar terms. SIGN 50: A Guideline Developer’s Handbook is also a useful resource for developers and participants (SIGN 2011).
Time commitment
Guideline development is time-consuming (Grol 2010). Development time for NICE guidelines ranges between 12 and 24 months depending on the type of guideline. Group members are required to attend regular meetings in London or Manchester, where NICE offices are located, for the duration of the development. Group members help to write the guidelines, review pre-consultation documents, and launch and promote published guidelines. Those contributing as reviewers need to set time aside to critically review the documents within tight deadlines and provide relevant clinical evidence and advice. Sometimes it is challenging to find nurses available to commit to being members of the development group for this length of time. Those working in the NHS are required to give at least six weeks’ notice to cancel clinics or find cover for their absence. There is no payment for participation but travel expenses and subsistence incurred for attending the meetings are reimbursed. Although
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this is not peculiar to nurses, it is challenging for nurses working as independent consultants who may experience loss of earnings. Employers’ support is necessary for nurses to commit to this length of time working in guideline development groups.
Competing interests
Guideline recommendations may be biased as a result of vested interests, local influence and personal opinions of the developers (Grol 2010). The challenge is being able to determine what these interests may be, how those interests could be perceived by others who come to know about them and whether these should preclude them from participating in the development of the guideline. NICE requires participants to contribute in an objective and transparent way and to state and acknowledge any possible conflict of interest by declaring these interests and signing a confidentiality agreement. It is important to declare competing interests, for example personal, family interest or pecuniary interest such as vested interests with pharmaceutical companies, or membership of advisory boards of competing or related companies. NICE keeps a register of interests and provides training for group members to clarify expectations and ways of working.
NICE negative recommendation
There are occasions when NICE does not recommend a certain treatment, contrary to the views of clinical specialists. This may be because evidence shows that, on balance, the treatment is not beneficial. A negative recommendation is defined as a decision ‘not to recommend’ or ‘do not do’. NICE makes decisions based on the technology appraisal of clinical effectiveness and cost-effectiveness of the drug. One may override the other having taken into account all other opportunity costs. Because there is limited funding, it can be challenging to balance patients’ needs for a particular drug with the wider societal benefit. Some healthcare professionals may feel such a decision could jeopardise the patient’s interests, particularly when they know the treatment to be effective. The challenge can sometimes be the ability to bring objectivity to deliberations. NICE consultees have the opportunity to appeal against draft recommendations that NICE makes. An independent appeal panel at NICE hears the appeal considering the views of the appellant – the consultee making the appeal – and that of the appraisal committee that made the original recommendation to determine if due processes were followed. An appeal can be made if:
NICE failed to act fairly. NICE formulated guidance that cannot reasonably be justified in light of the evidence submitted. NICE exceeded its powers. Appeals are not opportunities to rehash discussions because one does not agree with the recommendations.
Role of the Royal College of Nursing Since the establishment of NICE, the RCN has been involved in guideline development. The RCN has a well established system and process for engaging its members. The Standards, Knowledge and Information Services of the nursing department is responsible for managing the RCN’s involvement in NICE work programmes. This RCN team is the conduit between NICE and the RCN and actively seeks and ensures nursing input at each stage of guidance development. RCN members from various professional forums and networks are targeted and invited to participate appropriate to their expertise. RCN members’ responses are collated and inform the college’s responses to NICE. The responses are considered at relevant NICE committees and NICE responds to them formally. Information relating to the various topics is published by the RCN and in online community pages to raise awareness of the RCN’s involvement. Equally, the completed guideline is publicised through the same networks and online communities. Relevant articles profile the RCN’s involvement with NICE (Rapu 2005, 2007). The NICE Consultation Gateway pages (RCN 2012b) on the RCN website are good sources of information for current NICE consultations and how nurses can get involved. The RCN (2012b) offers support to members who wish to be involved in guideline development. Learning and development opportunities in the form of training and/or workshops covering critical appraisal and group dynamics, and an overview of understanding evidence-based practice, project management and equality and diversity in guideline development, are provided. The aim is to prepare and support nurses in relation to understanding the quality and usefulness of the research they will encounter and presenting this to guideline development group meetings and when reviewing consultation documents. The RCN also offers one-to-one support to those applying for guideline development membership if they need it. Each year, a member is sponsored to attend the NICE annual conference. The RCN developed a resource on its ‘learning zone’ based on the NICE (2010) guidance on
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Art & science guidance development venous thromboembolism (VTE), which won a commendation at the NICE Shared Learning Awards (NICE 2012b, 2014a). The award is a good source of implementation stories and case studies of involvement in and use of the NICE guidelines. The RCN has challenged some NICE recommendations by appealing against the final appraisal determination, the final recommendation of NICE about the use of a drug. The RCN older people’s forum in collaboration with the Alzheimer’s Society appealed and lobbied against a determination that contained ‘do not recommend’ decisions on drugs used to treat people with Alzheimer’s disease. The appeal process presents a balanced and independent opportunity for consultees to challenge NICE’s decisions. It is not a rehash of the argument, but an opportunity to challenge NICE when it has not acted fairly, construed a guidance that cannot be reasonably justified in the light of evidence it considered or acted outside its remit (NICE 2014b). Even though the outcome of appeals may not always be positive, it is a step that enables consultees to use the check and balance process of governance in guideline development.
Conclusion Evidence-based practice is vital for ensuring high quality patient care. NICE guidelines are effective contributors to the quality of practice and care. RCN support for NICE guideline development is evident in its active participation and support for nurse involvement. Nurses continue to be actively involved in the development of guidelines, providing the nursing perspective. It is vital that nurses continue to engage in this work and that nursing input is actively sought and secured. Effective practices and tools need to be in place to continue to encourage this. The RCN encourages and supports nurses to participate, and with guideline developers and employers, needs to ensure that the nurse’s role continues and is strengthened. The involvement of nurses will support effective implementation of NICE guidelines and ensure quality care. It is important that guideline developers and professional organisations continue to support healthcare professionals, in this case nursing staff, to engage actively in this work. It is also important that employers recognise the value of the input by supporting nurses who wish to participate in guideline development NS
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