Dataset Information

Participation and consultation engagement strategies have complementary roles: A case study of patient and public involvement in clinical practice guideline development.

ABSTRACT:

Background

Patient and public involvement (PPI) is recommended when developing high-quality clinical practice guidelines, but the effects of different PPI strategies are largely unstudied.

Objective

To assess the impact of participation and consultation strategies on guideline question development.

Design

Instrumental case study design.

Setting and participants

This study used a clinical practice guideline in development by the American Academy of Neurology. A patient, two caregivers and a dementia advocate participated in the guideline development group alongside clinicians. The guideline protocol was posted for public consultation for 30 days.

Interventions studied

Participation (patient representatives on the guideline development group) and consultation (public comment, survey) PPI strategies.

Main outcome measures

Public comment responses and guideline development group meeting transcripts were analysed descriptively. Transcript quotes were compared to the conceptual model of PPI in guideline development. The effects of participation and consultation strategies within the guideline case were compared.

Results

Participation strategies shaped discussions, set a patient-centred scope, highlighted personal aspects of disease, affected how professionals viewed PPI, identified issues overlooked by medical professionals, and contributed to selecting patient-relevant guideline populations and outcomes. Professionals responded to public comment more than patient representatives. Patient survey participants confirmed the priorities voiced by patient representatives on the guideline development group. Final guideline questions included populations and outcomes promoted by patient representatives despite negative feedback from professional public commenters.

Discussion and conclusions

Participation and consultation PPI strategies have different advantages. Congruence between strategies increases the strength of the patient voice. Guideline developers should prioritize using both strategies for successful PPI.

SUBMITTER: Armstrong MJ

PROVIDER: S-EPMC7104634 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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Publications

Participation and consultation engagement strategies have complementary roles: A case study of patient and public involvement in clinical practice guideline development.

Armstrong Melissa J MJ Gronseth Gary S GS Gagliardi Anna R AR Mullins C Daniel CD

Health expectations : an international journal of public participation in health care and health policy 20191229 2

<h4>Background</h4>Patient and public involvement (PPI) is recommended when developing high-quality clinical practice guidelines, but the effects of different PPI strategies are largely unstudied.<h4>Objective</h4>To assess the impact of participation and consultation strategies on guideline question development.<h4>Design</h4>Instrumental case study design.<h4>Setting and participants</h4>This study used a clinical practice guideline in development by the American Academy of Neurology. A patien ...[more]

PMID: 31884708

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Project description:BackgroundPatient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all.MethodsThis paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England. We propose a new model of professional practice - a 'cycle' of engagement and involvement - innovating across the complementary fields of public engagement and patient involvement, and working inclusively and in partnership with people in health research. Further, our approach capitalises on strategic collaboration offering economies of scale and a joined up way of working. Our ambition is to boldly experiment, learn and reflect, responsibly and based on evidence and partnerships, using methods of engagement that address issues of social justice.ResultsHere, we report on preliminary case studies exemplifying the impact of our approach, and data relating to achievements and learning between April 2017 and March 2018. Informed by our findings, we propose that our approach has the potential to be replicated elsewhere.ConclusionsOur practice and the beginning of its evaluation lead us to believe that our way of working and model of professional practice - the 'cycle' of engagement and involvement - is effective in: addressing our vision of making health research relevant and inclusive for everyone; and embedding and joining up public involvement in a busy and fertile translational health research ecosystem.

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Dataset Information

Participation and consultation engagement strategies have complementary roles: A case study of patient and public involvement in clinical practice guideline development.

Background

Objective

Design

Setting and participants

Interventions studied

Main outcome measures

Results

Discussion and conclusions

Publications

Participation and consultation engagement strategies have complementary roles: A case study of patient and public involvement in clinical practice guideline development.

Similar Datasets

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