3 How you can get involved

3.1 How to register as a stakeholder

When we talk about stakeholders, we mean organisations that have registered with us to say they are interested in getting involved in developing guidelines on particular topics. To register your organisation, you need to complete the stakeholder registration form on the NICE website.

There are different kinds of stakeholders:

  • Public stakeholders: national patient, service user, carer and community organisations that represent the interests of people whose health or care is covered by the guideline, and local Healthwatch organisations.

  • Professional stakeholders: national organisations that represent the people working in health and social care who provide the services described in the guideline.

  • Commercial stakeholders: companies that manufacture medicines, devices, food or other products the use of which may be significantly affected by the guideline[a].

  • Providers and commissioners of health and social care services in the UK.

  • Government organisations including the Department of Health, NHS England, the Welsh Assembly Government, NHS Quality Improvement Scotland and the Care Quality Commission.

  • Research organisations that have done nationally recognised research in the area.

  • Overseas organisations with a remit covering England.

[a] Tobacco companies with an interest in a particular guideline topic can register to comment on the draft scope and the draft guideline. Their comments are carefully considered and are made public with those of registered stakeholders. However, the term 'respondent' rather than 'stakeholder' is used for a tobacco company to acknowledge NICE's commitment to Article 5.3 of the WHO Framework Convention on Tobacco Control. This sets out an obligation to protect the development of public health policy from any vested interests of the tobacco industry.

We encourage stakeholder organisations to register their interest in a particular topic as soon as we start work on it. However, organisations can register as stakeholders at any point during guideline development. The list of stakeholders registered for each guideline is kept up-to-date on the NICE website. Please let us know if you know of other relevant organisations that not registered.

3.2 How stakeholder organisations can contribute

Once your organisation is registered you can take part in several ways by:

  • Encouraging people with relevant skills and experience to apply to join the Committee working on a guideline.

  • Attending a workshop, if one is held, to discuss the scope (which lists what the guideline will and will not cover).

  • Providing evidence if the guideline Developer makes a 'call for evidence'.

  • Commenting on the draft scope and the draft guideline, including on equality issues.

  • Helping NICE to promote our guidelines and put them into practice (implementation).

  • Telling us about reasons a guideline might need updating earlier than planned and contributing to consultations on whether to update a guideline.

3.3 How members of the public and practitioners can contribute

If you are using health or care services, or are a carer, advocate or practitioner, you can take part by:

  • Sending us comments on the draft scope and draft guideline as part of a stakeholder organisation, or representing the organisation at a workshop.

  • Becoming a committee member, either as a practitioner or a member of the public with experience in the topic of the guideline (lay member – see what do Committees do?).

  • Encouraging others to apply for Committee membership.

For some topics, there may also be the opportunity to:

  • Give evidence to the Committee as an expert witness.

  • Participate in a group discussion, interview or survey to help the Committee answer specific questions or to give feedback on draft recommendations.

There is more information on our website, including stories from people who have been lay members on Committees.

3.4 Scoping workshop

If we need advice from stakeholders to develop a draft scope, we may invite registered stakeholders to a workshop to talk about the key issues. If a workshop is held, this usually happens before we put the draft scope on our website for consultation.

We usually invite each organisation to nominate 1 person to attend the workshop. This means that we can hear views from a wide range of organisations. The person attending should be an expert in the guideline area. If your organisation represents people using services, carers, or a community affected by the guideline, the person attending should have a good understanding from the point of view of a patient, carer or the community. If there are so many registered stakeholders that it isn't possible for them all to attend a workshop, for practical reasons, we may ask them to nominate representatives from specific groups or roles (for example, specific types of specialist doctor).

Sometimes, virtual workshops such as webinars may be held instead of face-to-face workshops, if this meets the needs of the people attending (for example, for reasons related to disability).

The workshop is run by a senior member of NICE's quality assurance staff.

At the workshop we may ask participants:

  • For feedback on selected issues, including any important considerations for putting the guideline into practice.

  • To identify issues such as government policy or areas of care where people don't always receive the best possible service.

  • What should or shouldn't be included (for example, which groups of people should be included and where they receive their care or participate in an activity, and which interventions or services should be looked at).

  • To consider existing NICE guidance and how the planned guideline relates to them.

  • Who should be on the Committee in addition to lay members (see what do Committees do?) (for example, GPs, specialist doctors, people working in social care and public health, or from local government).

  • To encourage members of their organisations or people in their network to apply to be on the Committee.

After the workshop, we finish drafting the scope, and put it on our website for consultation. A summary of the discussions and the key points raised at the scoping workshop is posted on the NICE website with the draft scope.

3.5 Scope consultation

We put the draft scope on the NICE website for a 4-week consultation, and email registered stakeholders to invite them to comment. We include information and questions to help us find out what stakeholders think about specific issues. Consultation dates are given in advance on the NICE website and you can sign up for our monthly newsletter.

How to comment on the draft scope

  • Choose a contact to coordinate comments in your organisation.

  • Circulate the draft in your organisation if appropriate, making clear that it is for consultation and asking people to respond to the contact (rather than directly to NICE).

  • Combine the comments into 1 response from your organisation using the form provided (do not make changes to the draft scope itself) and include the name of your organisation and contact in your response.

  • Submit the comments by the closing date for the consultation, sending them to the dedicated email address for the topic.

The box has some suggestions of areas to think about when making your comments.

Points to think about when commenting on a draft scope

Make your comments as clear and specific as possible, explaining the reasons behind any changes you suggest.

How well does the scope:

  • Take account of issues relating to treatment and care, or improving health and wellbeing, which are important for people affected by the guideline?

  • Include medicines, procedures and other treatments or options for care (such as advice about lifestyle changes) that may be important for people affected by the guideline?

  • Include treatments or other interventions that are currently used, but may not be effective, acceptable or tolerable to people using services?

  • Note any equality issues or aspects of care or services that the guideline should address (examples include information and support, perceived risks and benefits of and individual choice or preference about a treatment or activity, and cultural differences that may affect the use of an intervention or approach to care)?

  • Promote equality of opportunity regardless of age, disability, sex, gender identity, ethnicity, religion and belief, sexual orientation and socioeconomic status?

  • Unfairly exclude any groups (for example, by age or general health)?

  • Use wording that is respectful of people using services, carers and people working in health or social care?

  • Explain how the guideline will fit with government policies, guidance (for example, from the Department of Health)?

  • Identify other major projects related to this topic (such as promotional campaigns) that should be used when developing the guideline?

After consultation, the scope is finalised, taking into account the comments received and the original 'referral' from the Department of Health and/or NHS England.

All comments, the changes made as a result, and the responses from NICE to each comment, are recorded in a table. This is sent to stakeholders 5 working days before the final scope is published.

The final scope, the comments and responses, and the equality impact assessment are posted on the NICE website.

Raising equality issues during the draft scope consultation

NICE considers how to promote equality, and how its guidelines might affect groups with characteristics protected by the Equality Act (2010), throughout the process of guideline development.

During development of the scope, NICE and the Developer consider any equality issues to decide whether:

  • the planned guideline is likely to promote equality and prevent discrimination

  • there are any concerns about equality that should be included in the scope.

The draft scope lists any groups or issues that need specific consideration – or states that no groups or issues need specific consideration. Stakeholders can raise equality issues during consultation on the scope.

We record issues and how they are dealt with in an 'equality impact assessment', which is kept up-to-date while the guideline is being developed, and published on our website.

3.6 Calls for evidence

The Developer may make a 'call for evidence' if they believe there may be useful evidence that will not be found by electronic searches. This might include information on how a condition affects people's lives, or how people or their carers feel about their care. The Developer invites all registered stakeholders and other relevant organisations or individuals with an interest in the guideline topic to submit evidence, and posts the invitation on our website. They normally request a response in 2–4 weeks. Further detail on calls for evidence can be found in developing NICE guidelines: the manual.

3.7 Confidential information

Confidential information should be used as little as possible when developing a guideline. Confidential information includes information that may affect share prices (this information is known as 'commercial in confidence') and information that is someone's intellectual property (this information is known as 'academic in confidence', because it has not been published yet). Organisations or individuals who submit evidence are asked to complete a checklist about any confidential information, and highlight this information. For details, see developing NICE guidelines: the manual.

If you include any confidential information in comments on draft scopes or guidelines, ensure it is highlighted and underlined.

3.8 Joining a guideline Committee

What do Committees do?

The Committee is the group that looks at the evidence and develops the recommendations, taking into account the views of stakeholders. It is made up of specialists in the topic, people working in health and social care more generally (such as GPs), commissioners, and at least 2 lay members. Lay members are people using health and care services and/or carers or advocates, and people from communities affected by the guideline (for example, if a guideline is aimed at a particular ethnic or social group). The Committee can invite expert witnesses to attend a meeting if needed, or bring in new Committee members who are specialists in areas covered by some of the recommendations.

Some Committees (topic-specific Committees) are formed to work on a single guideline. Others (standing Committees) work on more than one guideline, but recruit topic experts to join the committee for specific guidelines.

Manufacturers of pharmaceutical products or medical devices are not represented on the Committee if their drug or device is of direct relevance to the topic, because they could have a conflict of interest. However, they can register as stakeholders. If a guideline is likely to cover general areas relevant to the pharmaceutical or medical device industries, the Committee may include members of industry bodies.

Details of the different roles in each Committee can be found in developing NICE guidelines: the manual.

Applying to join a Committee

We recruit Committee members in an open process, advertising posts on the NICE website and elsewhere, and telling relevant stakeholders. We also ask stakeholders to encourage their members and people in their networks to apply. For details of the process, see our policy on Committee recruitment.

When selecting Committee members, we bear in mind that:

  • The Committee needs to include people with the greatest possible range of skills and experience.

  • Committee members are recruited for their individual experience and do not represent their organisations or professional groups.

The Developer provides an induction, training and support to all members of the Committee.

Training and support for members of the public to work with NICE

The Public Involvement Programme (PIP) is a team at NICE that:

  • Finds ways for the public to be involved in NICE's work.

  • Provides support on getting the public involved to NICE's internal teams, and the Developer.

  • Works with organisations representing service user, carer and community interests to help them get involved in the development of NICE guidelines.

  • Provides information, training and support to people who are interested in or contribute to NICE's work.

  • Contributes to the information for the public about NICE guidelines.

  • Advises the Developer on service user and public issues relevant to the development of the guideline.

  • Assesses the level and impact of the involvement of people using services, carers and the public in NICE's work.

If you are a member of the public or work for a voluntary or community organisation and would like to be involved in guideline development, contact the PIP team at pip@nice.org.uk.

If you work in healthcare, public health or social care, or in a professional stakeholder organisation, email our general enquiry address at nice@nice.org.uk.

3.9 Draft guideline consultation

Consultation with registered stakeholders is a crucial part of developing a guideline. Comments from stakeholders help us make sure the guideline is accurate and relevant to people who will be using it and to people using services.

How to comment on the draft guideline

The draft version of the guideline is put on our website for consultation with registered stakeholders. Consultation usually lasts for 6 weeks. A 4‑week consultation may be used for small guidelines or guideline updates. We tell registered stakeholders that the draft is available for commenting, and how to submit comments. We want stakeholders' views on important issues, such as how easy it will be for people to follow the recommendations. The box has some suggestions for areas to think about.

Points to think about when commenting on the draft guideline

Make your comments as clear and specific as possible. For example, explain why and how you disagree with a particular recommendation, or the way the Committee has interpreted the evidence.

The recommendations

  • How well do the recommendations:

  • cover the issues in the scope

  • reflect what the evidence says

  • take account of the choices and preference of people affected by the guideline, and the information and support they need

  • consider the specific needs of different groups (for example, children and young people and people from minority ethnic groups)

  • use wording that is clear and easy to follow, and respectful to individuals and communities

  • identify the right organisations and individuals to take action, and reflect the importance of people and organisations working together

  • promote equality of opportunity relating to age, disability, gender, gender identity, ethnicity, religion and belief, sexual orientation or socioeconomic status?

  • Do the recommendations include anything that people affected by the guideline might find unacceptable?

The evidence

  • Are there any possible inconsistencies or disagreements about how the Committee has interpreted and applied the evidence?

  • Tell us about any additional evidence, within the inclusion criteria for evidence reviews, that should inform the development of this guideline.

  • Do the research recommendations cover the important gaps in the evidence?

Implementing the recommendations

  • Which of the draft recommendations could have the biggest impact?

  • Which draft recommendations would be the most challenging to put into practice, for whom and why?

  • What would help users overcome these challenges? Tell us about any existing resources, national initiatives, or examples of good practice.

All comments from your organisation should be combined into 1 response. If your organisation and another registered stakeholder have similar views on the guideline, we encourage you to send a joint response.

The Developer will acknowledge each comment and answer it as completely as possible. The Committee considers whether changes to the guideline are needed because of consultation comments. If changes are made, this is made clear in the response to the comment. If no changes are made, the response to the comment explains why not. Comments and the responses are then published on the NICE website with the revised guideline.

If you are not part of a stakeholder organisation, it is best to contact an organisation on the list of stakeholders to see if you can add your comments to theirs. If you submit comments to us directly (not through a stakeholder organisation), the Committee will still consider your comments when revising the guideline, but will not respond to them or publish them on the website.

Fieldwork with people working in health or social care

When we consult on a draft guideline on a new, complicated or sensitive topic, the Developer may decide to field test the guideline with people providing services, people working in health or social care, or organisations that commission services.

The Developer asks how easy it will be to follow the draft recommendations, and how the recommendations might work. Fieldwork with people working in health and social care usually takes place during consultation. For details, see developing NICE guidelines: the manual appendix H.

Additional work with people using services

The Developer may arrange additional work with people affected by the guideline to find out how relevant and acceptable the guideline is to them. This work can also be done before the consultation. People using services may be invited to participate in a group discussion, interview or survey to help the Committee answer specific questions, or to give feedback on selected early draft recommendations. For details, see developing NICE guidelines: the manual appendix B.

Raising equality issues during the guideline consultation

Registered stakeholders can raise additional concerns about equality during guideline consultation. These may be included in the final equality impact assessment, which is published on the NICE website with the guideline.

When finalising a guideline, NICE and the Developer consider any concerns about equality raised during the development of the guideline and record how these have been addressed.

3.10 Publication and putting guidelines into practice

When a guideline is published, we email all registered stakeholders to let them know. At publication or soon afterwards, we publish tools that help organisations put the guideline into practice. The Developer and Committee members work with NICE's communications and implementation teams to promote the guideline when it is published and afterwards.

NICE may work with registered stakeholders and others to promote the guideline and support implementation.

3.11 Checking the need to update guidelines

Guidelines are checked regularly to see if they need updating, by looking for new evidence on the topic. If checks at 4 or 8 years after publication (or at any 4‑year check after that) indicate that the guideline should not be updated, we hold a 2‑week consultation with stakeholders about this.

We also consult stakeholders when we propose:

  • withdrawing a guideline

  • placing it on the static list – guidelines are placed on the static list if the evidence they are based on is unlikely to change, and are then checked every 5 years.

(See section 13.3 of developing NICE guidelines: the manual for more details about checking for updates.)

Anyone can let NICE know at any time, if they:

  • Are aware of new evidence that would change the recommendations in the guideline.

  • Are aware of a relevant new technology (for example, new medicines or medical devices) or if certain medicines or medical procedures are no longer used.

  • Have concerns about the safety of some of the recommendations.

  • Notice errors (such as misunderstood evidence or incorrect calculations) after the guideline is published.

We will consider any new information, and correct errors as soon as possible.