Article type
Year
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).
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).