Page 63 - Shared Guideline Development Experiences in Fertility Care

with the guidelines. e development required intensive patient engagement,
and the contributions of patient representatives in the MuG group and individual
patients acting via WikiFreya were considered valuable [18].
e MuG follows patient clinical pathways and uses a network structure that
includes all stakeholders, so that it pays much attention to the organization of the
di erent phases of fertility care and transitions from one phase to another. is
ensures better-integrated care (e.g., referral from the physician to the gynaecologist)
[22]. e attention to patient preferences, needs, and values may have increased
the level of patient-centredness [23]. e approach included an extensive review
of the guidelines throughout the development. It used the network structure for 3 which extra time was needed, but it enabled broader support of the guidelines and
may enhance future guideline implementation [24,25].
e participants liked the approach and viewed it as a promising format for developing MuGs. Enthusiastic patients and the energetic project coordinator helped make the approach work well. Suggestions for improving the approach were reported mainly at the organizational level (e.g., previous communication about individual roles and responsibilities, a detailed time line, and a detailed format for the guidelines). is correlates with the existing literature about clinical networks, which implies that using clinical networks requires a high degree of managerial organization [13,14,22,26]. More support sta might enhance the e ciency of the network approach. Engaging a librarian to help with literature searches might accelerate guideline development and increase e ciency [27]. However, the approach seemed time consuming for developing our set of ve related guidelines simultaneously. Unfortunately, it is di cult to compare our time investments with those of regular guideline development, since there is a dearth of published studies about this topic.
Strengths and limitations
Although the use of a clinical network has been suggested as an e ective strategy for implementing CPGs, this is the rst study that has applied this approach in developing MuGs [28-31]. Our guideline development closely paralleled the main recommendations of the US Institute of Medicine [9]. However, recommendations were not graded and to express patients’ input, patients’ recommendations were secondarily reformulated to a non-actionable form incongruent to the GLIA instrument. is non-actionable form could impede harmonization of patients and stakeholders generated inputs. In addition to other studies on guideline
Patient-centred network approach
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