Evidence map›Paper›PMID 37705726›Full record

ArticlePEC innovation2023

Collaborating with patients and caregivers to create web-based educational resources for people affected by cirrhosis.

Emily Johnson, Ashley Hyde, Derek Drager, Michelle Carbonneau, Vincent Bain, Jan Kowalczewski, Puneeta Tandon

Abstract read
In one paragraph

Article in PEC innovation, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Emily JohnsonDivision of Gastroenterology (Liver Unit), University of Alberta, Edmonton, AB, Canada.
Ashley HydeDivision of Gastroenterology (Liver Unit), University of Alberta, Edmonton, AB, Canada.
Derek DragerPatient Advisory Team (PAT), Cirrhosis Care Alberta, Canada.
Michelle CarbonneauDivision of Gastroenterology (Liver Unit), University of Alberta, Edmonton, AB, Canada.
Vincent BainDivision of Gastroenterology (Liver Unit), University of Alberta, Edmonton, AB, Canada.
Jan KowalczewskiNeuroscience and Mental Health Institute, University of Alberta, Edmonton, AB, Canada.
Puneeta TandonDivision of Gastroenterology (Liver Unit), University of Alberta, Edmonton, AB, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objective: To describe the development of multimodal, web-based educational resources about cirrhosis alongside patients and caregivers. Methods: We used an iterative process that was guided by the Strategy for Patient Oriented Research (SPOR) patient engagement framework in describing patient engagement activities to partner with a team of 16 patients and caregivers (Patient Advisory Team (PAT)). This process included five phases: a) Prioritize and gather content, b) design and build the website and videos, c) gather and integrate feedback, d) improve user accessibility, and e) assess usability and knowledge uptake for users. Results: This 2-year process resulted in a 55-page website and 78 animated and live-action videos on cirrhosis complications, procedures, nutrition, and exercise. We implemented usability testing through pre-defined tasks and a think-aloud method from individuals with no previous exposure to the website to assess navigation, appearance, and content issues. Following usability testing, we have been gathering quantitative data from each unique page about relevance and ease of use, as well as qualitative data on the value of the content itself. Conclusions: Collaboration between clinicians, patients, and caregivers is key to developing high-quality digital educational resources. Lessons from our process may help other organizations looking to address disease-specific knowledge gaps. Next steps with www.cirrhosiscare.ca will be continued iterative refinement and structured impact evaluation. Innovation: This project used a patient-centered approach to develop a comprehensive online educational resource for patients with cirrhosis. By having patients with cirrhosis as a key part of our team, we ensured that the site met the needs of this unique population.

Indexed as

Caregiver educationCirrhosisPatient educationPatient-oriented researchPatient website

Identifiers

PMID37705726
PMCPMC10495668

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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.