The identification of topics for research that are important to people with ulcerative colitis

Welfare, Mark; Colligan, Jackie; Molyneux, Sam D.; Pearson, Pauline; Barton, J R

doi:10.1097/01.meg.0000230088.91415.5b

Cited by 31 publications

(32 citation statements)

References 12 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Welfare and colleagues [22], in this issue, provide information with respect to ulcerative colitis. They have recruited typical patients with inflammatory bowel disease and engaged them in conversation about research, either individually or in focus groups.…”

Section: Patients' Priorities For Ulcerative Colitis Researchmentioning

confidence: 97%

“…In comparison, the HTA programme already has a more proactive strategy for involving both patients and practitioners in identifying and prioritizing research. It has commissioned a study on inflammatory bowel disease that matches the patient priorities identified by Welfare and colleagues [22]: this study addresses the impact of a package comprising a patient-orientated, evidence-based, self-help guidebook and patient-centred consultations on disease management and satisfaction in inflammatory bowel disease [24].…”

Section: Patients' Priorities For Ulcerative Colitis Researchmentioning

confidence: 98%

“…Given the level of patient support for ulcerative colitis research shown by Welfare et al [22], the funding and practical support for clinical trials and systematic reviews from volunteer-led organizations, and the feasibility of relevant trials shown by the HTA programme, this condition seems an appropriate focus for developing methods for involving patients in not only identifying priorities for broad research topics, but also prioritizing specific research questions about the effects of interventions.…”

Section: The Next Steps?mentioning

confidence: 98%

“…Welfare et al [22] point out that the Cochrane Collaboration Inflammatory Bowel Disease and Functional Bowel Disorders (IBD/FBD) Review Group 'has reviewed mainly pharmacological therapies so fary It has not reviewed, for example, the role of patient support groups or information in improving patient quality of life'. The Cochrane IBD/FBD Review Group responsible for preparing these reviews currently involves two patient advocates in the preparation of consumer synopses for completed inflammatory bowel disease reviews and eventually hopes to involve patient advocates in the editorial process [23].…”

Section: Patients' Priorities For Ulcerative Colitis Researchmentioning

confidence: 98%

“…There is an immediate opportunity to consider patients' broad priorities for research identified by Welfare et al [22] when making decisions about supporting research with charitable or public funds or supporting the preparation of systematic reviews.…”

Section: The Next Steps?mentioning

confidence: 99%

See 4 more Smart Citations

Patient involvement in setting research agendas

Oliver

2006

European Journal of Gastroenterology & Hepatology

View full text Add to dashboard Cite

Patient groups already support funding of trials and patient recruitment for colitis research. Patient and public engagement in setting research agendas for health research more generally is growing, particularly about the effects of treatment. Patient priorities for colitis research span a wide range of interests. Opportunities exist to build on strategic alliances between patient groups, clinicians and researchers for more open debate about what research should be done and how. Traditionally, patients and their families have two roles in health research: as research subjects, providing data at the request of researchers, and as fundraisers, supporting research and researchers. These roles are readily apparent in the area of research into inflammatory bowel disease, including colitis, and Crohn's disease, on both sides of the Atlantic. Growing evidence, however, suggests that health research agendas do not always reflect patients' priorities. Welfare et al. (this issue) add to the evidence by eliciting patients' priorities for colitis research. Methods for bridging patients' views and research agendas range from social science to deliberative public debate. In the first of these, social researchers, such as Welfare et al. (this issue), elicit and interpret patients' views and compare these with current research agendas. In the second, patients are supported and encouraged to engage in debates about research, whereby they bring their own interpretations and influence to the health research community. Organized colitis patient groups, with their current interests and alliances with research, are well placed to build on the work of Welfare et al., in partnership with researchers with the aim of planning research that meets the full range of their needs.

show abstract

Section: Patients' Priorities For Ulcerative Colitis Researchmentioning

confidence: 97%

Section: Patients' Priorities For Ulcerative Colitis Researchmentioning

confidence: 98%

Section: The Next Steps?mentioning

confidence: 98%

Section: Patients' Priorities For Ulcerative Colitis Researchmentioning

confidence: 98%

Section: The Next Steps?mentioning

confidence: 99%

See 3 more Smart Citations

Patient involvement in setting research agendas

Oliver

2006

European Journal of Gastroenterology & Hepatology

View full text Add to dashboard Cite

show abstract

Engaging stakeholders in pharmacoepidemiology research: Current state and recommendations

Castillo

Heath

Kim

et al. 2019

Pharmacoepidemiology and Drug

View full text Add to dashboard Cite

Purpose: Given current efforts to enhance patient-centered care and shared decision-making, the International Society of Pharmacoepidemiology Workgroup on Patient Engagement assessed patient and other stakeholder engagement in pharmacoepidemiology research and provides recommendations for the field.Methods: A systematic review used MEDLINE and EMBASE to identify published literature from 2005 to 2016 addressing how stakeholders-patients, caregivers, and others-assisted researchers conducting pharmacoepidemiologic research. Three pairs of Workgroup members screened titles and abstracts to select articles for fulltext review and analysis. Two Workgroup members abstracted the following data: research focus, characterization and role of stakeholders, and type(s) of engagement strategy employed. Data were summarized descriptively.Results: We identified 5717 references for abstract screening. Of these, 69 met the criteria for full-text screening, and 11 were selected for data abstraction. Of these 11 studies, seven focused on the development of a research agenda and eight had stakeholders react or advise on an aspect of the study. Although patients were the most commonly identified stakeholders, advocacy groups and health care professionals were also frequently identified. Some studies reported the engagement of other stakeholders, including local government or policy experts. Engagement strategies varied, with five studies using more than one strategy. Studies often did not indicate the involvement of stakeholders in developing the study design or with implementation.Conclusions: Currently, few pharmacoepidemiology publications mention patient or other stakeholder engagement in the design, analysis, or reporting of research. This suggests that there are opportunities to expand stakeholder engagement and/or increase the transparency of reporting stakeholder engagement. KEYWORDS benefit-risk assessment, patient engagement, patient involvement, pharmacoepidemiology, pharmacovigilance, stakeholder participation Preliminary findings of this research were presented at

show abstract

Successful implementation of a stakeholder engagement program for pharmacoepidemiologic research

Cromer,

Steiner,

York

et al. 2023

Pharmacoepidemiology and Drug

View full text Add to dashboard Cite

PurposeRigorously conducted pharmacoepidemiologic research requires methodologically complex study designs and analysis yet evaluates problems of high importance to patients and clinicians. Despite this, participation in and mechanisms for stakeholder engagement in pharmacoepidemiologic research are not well‐described. Here, we describe our approach and lessons learned from engaging stakeholders, of varying familiarity with research methods, in a rigorous multi‐year pharmacoepidemiologic research program evaluating the comparative effectiveness of diabetes medications.MethodsWe recruited 5 patient and 4 clinician stakeholders; each was compensated for their time. Stakeholders received initial formal training in observational research and pharmacoepidemiologic methods sufficient to enable contribution to the research project. After onboarding, stakeholder engagement meetings were held virtually, in the evening, 2–3 times annually. Each was approximately 90 min and focused on 1–2 specific questions about the project, with preparatory materials sent in advance.ResultsStakeholder meeting attendance was high (89%–100%), and all stakeholders engaged with the research project, both during and between meetings. Stakeholders reported positive experiences with meetings, satisfaction, and interest in the research project and its findings, and dedication to the success of the project's goals. They affirmed the value of receiving materials to review in advance and the effectiveness of a virtual platform. Their contributions included prioritizing and suggesting research questions, optimizing written evidence briefs for a lay audience, and guidance on broader topics such as research audience and methods of dissemination.ConclusionsStakeholder engagement in pharmacoepidemiologic research using complex study designs and analysis is feasible, acceptable, and positively impacts the research project.

show abstract

The identification of topics for research that are important to people with ulcerative colitis

Cited by 31 publications

References 12 publications

Patient involvement in setting research agendas

Patient involvement in setting research agendas

Engaging stakeholders in pharmacoepidemiology research: Current state and recommendations

Successful implementation of a stakeholder engagement program for pharmacoepidemiologic research

Contact Info

Product

Resources

About