The guideline development group’s chair or moderator has a key role in ensuring the group takes into account patient and carer perspectives from consultation feedback and other sources. The patient and public members can also help the group consider the inclusion of any material or amendment arising from patient or carer feedback that will strengthen and improve the guideline. Some recommendations will not be feasible for various reasons. Some patient and public members may be well placed to present the proposed modifications and rationale to the broader guideline development group. (This is a model that has been effective with systematic review development and has worked well in guideline groups with patient or public members, who choose to take on this role.) For all types of comments received, final uptake decisions should be in accord with the guideline development group’s ongoing decision-making processes.
Key guideline bodies promote openness and transparency in the consultation process. The US’s Institute of Medicine (2011; now the National Academy of Medicine) advises guideline developers to keep a written record of the rationale for modifying or not modifying a guideline, in response to reviewers’ comments. Similarly, as part of Australia’s National Health and Medical Research Council’s (NHMRC 2016) approval process, guideline developers must provide details of consultation responses and explain why and how the guideline was altered. The NHMRC also advocates making a summary of submissions and developers’ responses publicly available (2018). NICE enters all comments into a table, which includes a ‘responses’ column for acknowledging and answering each comment, including setting out what changes have been made to the guideline or explaining why no change has been made. The NICE guidelines manual sets out its process for dealing with stakeholder comments (2014). Other major guideline developers, such as GuíaSalud in Spain and the German Agency for Quality in Medicine (AEZQ), follow a similar open and transparent process for responding to feedback, including making the consultation comments and responses publicly available.
On publication of a guideline, thank all those who responded to the consultation. Consider using social media to publicly thank patient and public advocacy groups who took part in the consultation because this helps them to showcase their involvement in important guidelines work, as well as building relationships with key stakeholders. Doing this can also increase awareness of the guideline among patients and the public who follow the group on social media.