EURURO Vol. 72 No. 2

Platinum Opinion

Changing Current Practice in Urology: Improving Guideline

Development and Implementation Through Stakeholder

Engagement

Sara J. MacLennan

a , b , 1 ,

Steven MacLennan

a , 1 ,

Axel Bex

c ,

James W.F. Catto

d ,

Maria De Santis

e ,

Adam W. Glaser

f ,

Borje Ljungberg

g ,

James N’Dow

a ,

Karin Plass

h ,

Marta Trapero-Bertran

i ,

Hendrik Van Poppel

j ,

Penny Wright

f ,

Rachel H. Giles

k , l , *

Academic Urology Unit, University of Aberdeen, Aberdeen, UK;

Urological Cancer Charity, Foresterhill Health Centre, Aberdeen, UK;

Department of

Urology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands;

Academic Urology Unit, University of Sheffield,

Sheffield, UK;

Cancer Research Centre, University of Warwick, UK;

Leeds Institute of Cancer & Pathology, University of Leeds, Leeds, UK;

Department of

Surgical and Perioperative Sciences, Urology and Andrology, Umea˚ University, Umea˚, Sweden;

European Association of Urology Guidelines Office, Arnhem,

The Netherlands;

Faculty of Economics and Social Sciences, Universitat Internacional de Catalunya, Barcelona, Spain;

Department of Urology, University

Hospitals of KU Leuven, Leuven, Belgium;

Department of Nephrology and Hypertension, Regenerative Medicine Centre Utrecht, University Medical Centre

Utrecht, Utrecht, The Netherlands;

International Kidney Cancer Coalition,

www.ikcc.org

There is a consensus among practitioners that clinical

practice guidelines (CPGs) improve care

[1] .

Moreover, CPGs

empower patients to make informed health care choices,

influence health care policies, promote distributive justice,

and advocate better delivery of services. However, it is

currently unclear how key stakeholders (eg, patients, carers,

charitable organisations, health care funders) can be active

in the development and implementation of guidelines in a

meaningful way alongside the traditional clinical and

methodological membership. The hurdle of including key

non-medical stakeholders is perceived as substantial

despite patient-focused outcomes.

CPGs could also work very effectively to promote user

engagement in treatment choices and decision-making.

Inclusion of patients and other key stakeholders could

potentially facilitate direct discussions regarding the

process of care, outcomes of importance, and patient

preferences, while weighing experiential benefits and

harms of different treatment regimens

[2]

. Ultimately, all

parties would benefit from informed choice and improved

treatment adherence

[3]

. Examples in which patients are

successfully engaged in specific circumstances include the

James Lind Alliance methodology

[4]

and the COMET

initiative for core outcome set development

[5]

. These

coalitions represent excellent but isolated efforts that

would ideally be ‘‘joined up’’ to a wider process subject

to systematic evaluation.

Here, we propose a model that addresses all the

different agents (patients, carers, charitable organisations,

and health care funders, in addition to specialists)

involved in health-related decisions. Importantly, our

proposed model incorporates key stakeholders as non-

tokenistic panel members with clearly defined responsi-

bilities

( Box 1

The role of stakeholders in the development of CPGs

should be shaped to minimise bias within this process. All

panel members are expected to contribute appropriate

comments to the discussion

[6] .

For patient members,

discussion needs to be framed in terms of the process of care

and how to prioritise clinical questions

[2]

. Importantly,

the patient representative brings another perspective on

the design and delivery of care to the discussion, rather than

making decisions on which treatment is best. However,

in helping to prioritise the outcomes of most importance in

deciding whether one treatment is better than another, the

patient voice is clearly important.

E U R O P E A N U R O L O G Y 7 2 ( 2 0 1 7 ) 1 6 1 – 1 6 3

ava ilable at

www.sciencedirect.com

journal homepage:

www.eu ropeanurology.com

* Corresponding author. Department of Nephrology and Hypertension, Regenerative Medicine Centre Utrecht, University Medical Centre Utrecht,

Uppsalalaan 8, 3584 CT Utrecht, The Netherlands. Tel. +31 887556508.

E-mail address:

r.giles@umcutrecht.nl

(R.H. Giles).

These authors contributed equally.

http://dx.doi.org/10.1016/j.eururo.2017.02.008

0302-2838/