When engaging with stakeholders is tricky: effective and ethical stakeholder engagement in reviews on sensitive, challenging or controversial topics

Workshop category: 

  • Patient or healthcare consumers involvement and shared decision-making
Date and Location

Date: 

Sunday 16 September 2018 - 14:00 to 15:30

Location: 

Tinto
Contact persons and facilitators

Contact person:

Katy Sutcliffe
Ginny Brunton

Facilitators:

Sutcliffe K1, Brunton G2, Dickson K3, Stokes G1, Khatwa M4, Rees R5
1 EPPI-Centre, UCL, London, United Kingdom
2 EPPI-Centre, UCL Institute of Education, London, United Kingdom
3 , United Kingdom
4 Institute of Education, UCL, London, United Kingdom
5 EPPI-Centre, Department of Social Science, UCL, London, United Kingdom

Acknowledgements:

Oliver S1, Khouja C2
1 EPPI-Centre, UCL, London, UK
2 Centre for Reviews and Dissemination, York University, UK
Target audience

Target audience: 

• Guideline and systematic review authors • Patients and the public • Researchers with an interest in methods for PPI

Level of difficulty: 

Basic
Type of workshop

Type of workshop : 

Training
Abstract

Abstract:

Background:
Public and Patient Involvement (PPI) helps make systematic reviews and evidence-informed guidelines more relevant to the people using them, or those using services they influence. When reviews cover particularly sensitive or controversial topics understanding of patient and public perspectives is crucial. However, the sensitivities that necessitate engagement also introduce significant challenges for engaging effectively with stakeholders. We will draw on recent experiences of working with patient advocacy groups on two such topics: Lyme disease and Hepatitis C. We will emphasise that while the work was hugely valuable and informative – for contextualising review findings and selecting priority outcomes - there were significant challenges in ensuring the engagement was conducted as effectively and ethically as possible.

Objectives:
- To introduce the potential benefits and challenges of engaging with stakeholders in reviews on sensitive topics.
- To provide an opportunity to focus on the ethical issues surrounding engagement with stakeholders on sensitive topics.
- To enable participants to consider the effort and skills required to maintain good relationships with stakeholders.

Description:
The workshop will involve an introductory presentation on our recent experiences of the benefits and challenges of PPI in two reviews on sensitive topics (15 minutes). This will be followed by two practical scenario-based activities (30 minutes per activity: 20 minutes for small-group discussion, 10 minutes for whole group feedback). We will develop scenarios reflecting the challenges we faced, and participants will work in small groups to consider possible ways of handling them before feeding back their strategies to the whole group. The first scenario will reflect challenges involved in engaging with stakeholders (e.g. ensuring the fair and equal participation of multiple and distinct advocacy groups). The second scenario will address challenges around how stakeholder input feeds into the review (e.g. managing expectations about how input will be used and reported in the review, dealing with opposing views about which issues should be emphasised or what language to use). We will end with a whole-group discussion to draw on participants’ own experience of conducting PPI in challenging or sensitive areas. (15 minutes).

Relevance to patients and consumers: 

Patient and public involvement (PPI) helps make systematic reviews more relevant to the people using them. We aim to show the effort required and the skills reviewers need to undertake PPI in reviews about sensitive or controversial topics. We will draw on our experiences of working with patient advocacy groups in reviews on two such topics: Lyme disease and Hepatitis C. PPI in these reviews was hugely valuable and informative, but the sensitive topics introduced challenges. We will share how we worked with patient groups to tackle those challenges to maintain good relationships and ensure the fair and equal participation of different groups.