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Pittens et al. (2013) reported on a consultation model for a guideline on the resumption of (work) activities after gynaecological surgery, for which there was no patient organisation. They consulted gynaecological patients and professionals separately, in 2 parallel trajectories. They found that to ensure the motivated involvement of an unorganised patient population, like gynaecological patients, a skilled facilitator was essential. The researchers convened 3 focus groups with patients at the beginning of the project to identify their problems, needs and preferences for peri-operative care and counselling in the resumption of (work) activities. They also sought participants’ ideas for the development of a web-based patient version of the guideline. Participants received regular feedback during the project and were involved in the testing of the patient version. The researchers used an evaluation framework to assess the impact of this involvement and concluded that patients’ input helped ensure the guideline was applicable in daily practice. The authors suggested that increased patient involvement could be achieved by integration of the 2 parallel trajectories with additional participatory activities, such as a dialogue meeting. They also suggested that more patient involvement in the development of the recommendations of the clinical guideline may result in increased relevance and quality of the recommendations.
NICE in the UK
Focus groups for the NICE guideline on end of life care for infants, children and young people with life-limiting conditions: planning and management (NG61; 2016): Because of limited evidence and in the absence of representative views from the guideline committee, young people with life-limiting and life-threatening conditions were asked for their views and opinions on selected review questions. This included their preferences for place of care, information and communication provision, personalised care planning, and psychological care (Report, appendix L, NG61).

Survey for the NICE guideline on sedation in under 19s (CG112; 2010): Guideline developers worked with a children’s hospital to survey children and young people about their views and experiences of sedation for diagnostic and therapeutic procedures. Hospital staff obtained feedback through hand-held touch screen computers, which young children can use. The survey results were found to be very useful for the guideline development group’s work. (See chapter 7 of the full guideline for further information.)
In-depth interviews and group discussions were conducted with patients for 2 GuíaSalud guidelines on anxiety and insomnia (Díaz del Campo et al. 2011). The findings, combined with information from a systematic review of the evidence, were used to inform the scope and key questions for each guideline. The information provided an important orientation on patient-focused outcomes. Serrano-Aguilar et al. (2015) report on a consultation with Spanish patients for a guideline on systematic lupus erythematosus. The project’s aim was to incorporate patients’ perspectives in the design of this guideline. To this end, they conducted a systematic review of literature and consulted patients using a Delphi-based approach. Relevant topics from both sources were merged and discussed by the guideline development group (which included a patient representative) to set the key questions for the guideline to address. The authors recommended such a multi-component strategy to address the gap between the available evidence and current patient needs and preferences.