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the skills and qualities/backgrounds desired for each seat
should be defined a priori, and then appropriate members
appointed in a transparent process, preferably balanced for
area of expertise, gender, geography, experience, and
perspective. All members should be interviewed. Once
appointed to a panel, members should go through methods
training to serve a time-limited appointment.
A guidelines panel should have at least one patient
representative as a non-medical member, although prefer-
ably additional professionals allied to medicine could also
be invited (nurse practitioners, social workers, health care
economists, etc). The selection procedure for non-medical
members should be equally transparent. Ideally the patient
advocate will be able to represent the broad interests of the
target group and will have an education level appropriate to
the tasks provided. Masterclasses such as those provided by
the European School of Oncology aimed at training aspiring
patient advocates to work with professionals to promote
their interests should be considered as a necessary
investment. The non-medical panel members should be
supported with appropriate-level material to enable
participation in priority-setting, conveying patient-impor-
tant outcomes, and CPG development.
Importantly, we propose that the role of the patient
advocate is to link the panel’s guidelines back to their
national and international community to canvas opinion on
priority-setting and outcome measures
( Fig. 1). This
feedback/feedforward loop will also contribute to the
prioritisation of research. Current examples within urology
of the provision of evidence-based care through a partner-
ship between the clinical team, the patients, and researchers
include UCAN (Urological Cancer Charity) and the IKCC
(International Kidney Cancer Coalition) [12,13–16]. A key
advantage of these linkages with large national and
multinational stakeholder groups is that they are almost
by definition trained at a professional level of communica-
tion with medical experts, pharmaceutical companies, and
other patients alike.
2.
Conclusion
Patient advocates and other stakeholders can add subs-
tantial value to CPG development, dissemination, and
implementation. We propose modification of the composi-
tion of guidelines panels and the use of measurable
outcomes to improve guidelines practice. Ineffective
dissemination of recommendations carries a risk of varia-
tions in practice. Consequently, patients will not always
receive the best possible care, with greater potential to
experience harm. Furthermore, if all stakeholders, including
patients, are meaningfully included in discussions about
which research areas should be prioritised, what outcomes
are of the highest importance, or which recommendations
are made, then informed shared decision-making should
result. In short, our model aspires to truly capture the voice
of the local and national stakeholder communities and feed
this forward to an international guideline panel to improve
outcomes and adherence to CPGs.
Conflicts of interest:
The authors have nothing to disclose.
Acknowledgments:
Rachel H. Giles acknowledges support from the
Dutch Kidney Foundation (grant CP11.13 KOUNCIL) and EU FP7
programme 305608 ‘‘EURenOmics’’. The sponsors played a role in
manuscript preparation.
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