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Dissemination of guidelines is about raising awareness among the public, patients and professionals of the existence and content of the guideline. Dissemination plans are ideally developed in parallel with developing recommendations (SIGN 2019). Dissemination plans are needed to clarify at the start of the guideline development process the target audience, which will determine the scope, objectives, format, style and wording of the recommendations as well as the tools for dissemination (NICE 2020, Schipper et al. 2016, Armstrong et al. 2018).  

Patient and public involvement in dissemination strategies is valuable to develop educational materials, online resources and implementation tools that public and professional audiences find useful, understandable and convincing. This is demonstrated in case studies 1 and 2.

Case Study 1

On publication of their epidermolysis bullosa (EB) psychosocial guideline in 2019, DEBRA International circulated the news to:

– 45 member patient support groups
– 3,422 social media followers
– 400 members of the DEBRA International Research Involvement Network
– 530 members of the international EB clinical network (EB-CLINET), and
– 407 members of the clinical practice guideline network.

DEBRA International also gave presentations on the guideline at the annual congress in Switzerland (2018) and the first EB World Congress ‘EB 2020’ (2020), attended by 690 delegates representing 215 organisations from 54 countries. Patient support groups involved with DEBRA International are patient-founded and led (many people within the clinical practice guideline network are also affiliated with these groups). They further supported dissemination in the following ways:

– recirculating news about the guideline to their members and signposting to the document hosted on the DEBRA International website
– hosting the guideline on their own websites
– presenting the guideline at events, such as national patient and clinical meetings, study days, and forums
– presenting real-life patient stories to complement the guideline content
– liaising with organisers of other groups to promote it, for example, following discussions with DEBRA Norway, it was included in the programme of the European Rare Disease Day (2019).

At EB 2020, DEBRA International launched 3 patient versions of the guideline to support adults with EB, parents of children with EB, and both caregivers and patients in understanding the multidisciplinary team involved in their care processes. These are hosted on the DEBRA International website, circulated by the same means, and freely available. Currently, DEBRA Belgium is translating these into Dutch, and there have been requests for Turkish versions.

DEBRA International started a programme to develop EB infographics for low-resource countries to help EB patients, their families, and doctors in countries without a DEBRA group. EB infographics are more pictorial ensuring key guideline recommendations remain consistent no matter where people live. For the EB Psychosocial guideline, the ‘Healthy mind and control’ EB infographics are currently being developed.

Case Study 2

The Scottish Intercollegiate Guidelines Network (SIGN) produced the first UK guideline on children and young people exposed prenatally to alcohol. The guideline is also accompanied by downloadable information for individuals having assessment for fetal alcohol spectrum disorder (FASD) and information for clinicians to support individuals and their carers before, during and after the assessment process. To raise awareness of the guideline, there was extensive coverage on social media with retweets from various charities including NOFASD-UK, Scottish Drugs Forum, Alcohol Awareness, FASD Network UK, and Adoption UK. This was to endorse the impact of the SIGN guideline on patients and carers in Scotland. SIGN involved a young person living with FASD in the production of a YouTube video animation on FASD that used their story to increase awareness of the condition and the guideline recommendations with both professionals and the public. This was a different approach, which suited audiences with different learning styles and allowed access to new audiences on a wider platform. The video received 930 views within the first 6 months of publication and supported social media promotion of the guideline recommendations.  

Strategies for disseminating guidelines to patients and the public

To ensure patients and the public are aware of guideline recommendations, a combination of strategies is essential (Schipper et al. 2016). One strategy is to disseminate guideline recommendations and their rationales using patient and public versions of guidelines in various formats and other decision-making tools (DECIDE patients and public, Schaefer et al. 2015, Santesso et al. 2016, Utrankar et al. 2018). Details on the development of these and how patients and the public are involved in the process is provided in the chapter on how to develop information from guidelines for patients and the public.

When disseminating guideline recommendations through patient and public versions of guidelines, the involvement of patients and the public in multiple dissemination strategies outlined below have been found to be effective (Schipper et al 2016). These include:

  • media releases involving patients and the public
  • digital tools, such as websites and apps
  • providing copies of the patient and public version to public places such as libraries
  • using community champions to disseminate patient versions of guidelines to patients.

Media releases

Involving individual patients, the public, and carers in media releases provides a useful platform to highlight their personal stories and can help to raise awareness of guideline recommendations. Patients, carers and members of the public, who have helped develop guidelines, should be supported to be involved in media releases to highlight the importance of making diagnosis and treatment decisions based on the latest evidence. Patients and the public can also help promote awareness that patients helped develop the guideline to ensure that the needs of users shaped the recommendations. Consent should be collected from the patient, carer or member of the public to share personal experiences of care in media releases. The individual’s contact details should not be shared, and comments should be sent to the guideline organisation. Any criticism should be responded to directly by the guideline organisation. Media releases shared via social media should be shared from the guideline organisation’s social media account. 

Digital tools

The use of digital tools, such as apps and websites, can help to raise awareness of guideline recommendations. Web-based self-management programmes can serve as a tool for healthcare professionals to share evidence-based information to help patients to successfully manage their conditions (Brosseau et al. 2012). 

Community champions

People living with particular conditions have expert knowledge to become community champions, and it is both feasible and effective to involve them in adaptation of information from guidelines for patients, for example self-management guides (Campbell at al. 2018). Patient, public, and carer members of guideline development groups can act as champions for change. Together with other patient champions, they are in a good position to communicate to others the importance of the evidence when making decisions about their own care. 

Providing support and training for patients and members of the public to become community champions is one approach that guideline developers can take to disseminate patient versions of guidelines to patients and the public. This is highlighted in SIGN 50’s guideline developers handbook. Community champions educate and raise awareness of guidelines by organising stalls, talks and presentations at various places where patients and the public are likely to be. Examples include health conferences, community groups and local festivals. Patients and members of the public can also be supported to participate in virtual events, such as conferences and webinars, to raise awareness of guideline recommendations. Case study 3 highlights how patient and public members of guideline groups can be trained and supported to become community champions to assist with dissemination of guidelines. 

Case Study 3

SIGN appointed patient members of guideline groups and members of the public to become Awareness Volunteers (Community Champions). In addition to patients who were members of guideline development groups, others were recruited through patient groups, charities, voluntary organisations and volunteer centres.

Expectations of the role were clarified. The role included contributing to advertising materials, exhibiting at events, conferences and community hospitals, and delivering talks to patient and community groups about SIGN and patient versions of guidelines. In addition to this, Awareness Volunteers delivered talks to student nurses to raise awareness of guidelines and patient versions of guidelines.

SIGN provided training and support, which included:

– training on guideline development processes
– practical tasks to develop communication and presentation skills
– a named contact for individuals, who could support them in their role
– availability of a buddy for people new to the role.

Resources at the organisational level needed to successfully involve patients and members of the public in dissemination groups included:

– staff time to recruit, train and supervise patient and public members (see the chapter on recruitment)
– sufficient finances to reimburse out-of-pocket expenses, including travel expenses, childcare expenses and carer allowance (see the chapter on recruitment)
– sufficient finances for publicity materials
– possibly, financial compensation for patient and public representatives’ time and work.

Patient organisations and networks of patients

Patient organisations and charities can promote the guideline (and its patient version) through social media, in their newsletter, at their annual conference, hosting it on their website (see case study 4), and including it in the information packages provided to their members.

The benefits of organisations and charities promoting guidelines include that:

  • they have an established and engaged membership base
  • patients and the public may be more likely to access information through their channels when searching for information
  • they are a trusted source of information for the public, and
  • their knowledge of the patient and public group can enable them to pick out and phrase the most relevant recommendations for their audience.

Patient organisations can organise events where people share their experiences and take part in training and education (Schipper et al. 2016). Recommendations from guidelines can be disseminated at these events organised for patients and the public, for example, through posters, pocket cards, handouts and summaries. Discussions can take place on how patients can use them to help them take part in shared decision making (see the chapter on how to develop information from guidelines for patients and the public ). Patient organisations may also provide telephone advice based on guideline recommendations. 

Networks or ‘virtual panels’ of patients and the public can aid the dissemination of recommendations from guidelines as shown in SIGN 100’s handbook for patient and carer representatives. SIGN’s Patient Network members are alerted when new guidelines or patient versions of guidelines are published. Network members can raise awareness of them by circulating them to patients and other patient organisations.

Case Study 4

Patient organisations promoting NICE guidelines:

Mind provides links to NICE guidance in their treatment and support sections of topics. For example, in schizoaffective disorder.

The MND Association created patient friendly resources to support the NICE guideline on motor neurone disease (NG42 2016). These include a pocket guide containing a summary of what you should expect from your care and an animated video setting out key aspects of the guideline.

Strategies for disseminating guidelines to professionals

The involvement of patients and the public in dissemination plans can be crucial in increasing awareness of the guideline, not only among patients and the public, but also among healthcare professionals. Various strategies exist for disseminating guidelines to professionals, including educational materials, educational meetings such as conferences, and mass media information. Evidence shows that when multiple strategies for dissemination and implementation of guidelines are used, significant improvements in knowledge, practice and patient outcomes are likely (Fischer et al. 2016, Schipper et al. 2016).

Many patient organisations, charities and their networks include close connections with health and social care professionals in their disease area. They can thus promote the guideline to professionals through social media, on their websites, and at events and workshops that are attended by both professionals and patient organisations. Patient organisations and charities also send members to attend conferences aimed at (and organised by) healthcare professionals, to promote their own organisations and learn about new developments concerning their condition. Patient and public representatives from guideline groups can also be trained and supported by guideline organisations to speak at relevant conferences to raise awareness of the guideline with healthcare professionals. Case study 3 provides details of support and training for this role. 

Patients and the public who have been involved with the development of guidelines can be supported to take part in media releases aimed at professionals to raise awareness of guideline recommendations (see case study 5).

Case Study 5

SIGN published its guideline on risk reduction and management of delirium on World Delirium Awareness Day. To help raise awareness of the guideline, the patient representative from the guideline development group was involved in a media release. They were supported to share their experience of delirium and how the guideline could improve care in a blog and video

Recruiting patients and members of the public as community champions can also help to raise awareness of guidelines with health and social care professionals (see case study 3).