ArticleMedical care2018
Crohn's and Colitis Foundation of America Partners Patient-Powered Research Network: Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network.
Article in Medical care, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 16 citations in OpenAlex.
- Questions for more insightful and useful analyses of barriers and facilitators to public involvement and engagement in health research: a critical narrative review.Research involvement and engagement · 2026Review
- Investigate sodium orthovanadate molecular mechanisms in diabetes-aggravated ulcerative colitis, focusing on Nrf2/Keap1 antioxidant and NF-κB/IL-6 inflammatory pathways.Journal of molecular histology · 2026Article
- Reflections on youth partnership in a randomized controlled trial of an intervention to optimize transition from pediatric to adult care in inflammatory bowel disease.Health care transitions · 2025Article
- Next-generation non-animal models for inflammatory bowel disease:NAM journal · 2025Review
- Potential Use of Antioxidant Compounds for the Treatment of Inflammatory Bowel Disease.Pharmaceuticals (Basel, Switzerland) · 2023Review
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Identifying and prioritizing benefits and risks of using privacy-enhancing software through participatory design: a nominal group technique study with patients living with chronic conditions.Journal of the American Medical Informatics Association : JAMIA · 2021Article
- Article
- Adaptation of TECCU App Based on Patients´ Perceptions for the Telemonitoring of Inflammatory Bowel Disease: A Qualitative Study Using Focus Groups.International journal of environmental research and public health · 2020Article
- Using Patient and Family Engagement Strategies to Improve Outcomes of Health Information Technology Initiatives: Scoping Review.Journal of medical Internet research · 2019Article
- The Role of Participants in a Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- Health Tracking and Information Sharing in the Patient-Centered Era: A Health Information National Trends Survey (HINTS) Study.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 3 institutions in 2 countries.
Funding
Abstract
backgroundTo build a Patient-Powered Research Networks (PPRN) that prioritizes the needs of its members who have inflammatory bowel diseases (IBD), we sought to better understand patients' preferences for what are the essential features that will facilitate and sustain engagement.
methodsWe conducted a two-phase qualitative study. Seven focus groups involving 62 participants with IBD were conducted (phase 1). Focus group results informed the phase 2 cognitive interviews, which included 13 phone interviews. Topics included experiences with IBD and research, PPRN engagement, patient-generated health data, and resources/tools to facilitate self-management. All focus groups and interviews were digitally recorded, transcribed verbatim, and analyzed in ATLAS.ti 7.5. Thematic categories were derived from the data, and codes were grouped into emergent themes and relationships.
resultsFour major themes emerged through inductive coding: (1) the impact of knowing; (2) participation barriers and challenges; (3) engagement and collaboration; and (4) customizable patient portal features/functionalities. Participants were motivated to participate in the PPRN because the knowledge gained from research studies would benefit both society and the individual. Main concerns included credibility of online resources, pharmaceutical industry profiting from their data, data security, and participation expectations. Participants wanted a true and equal partnership in every phase of building a PPRN. Participants felt it was important to have access to personal health records and be able to track health status and symptoms.
conclusionPartnering with participants throughout PPRN development was critical to understanding the needs and preferences of patients with IBDs and for shaping engagement strategies and the portal's design.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.