Evidence map›Paper›PMID 39075576›Full record

ArticleResearch involvement and engagement2024

Co-creating and hosting PxP: a conference about patient engagement in research for and by patient partners.

Dawn P Richards, Hetty Mulhall, Joletta Belton, Savia de Souza, Trudy Flynn, Alex Haagaard, Linda Hunter, Amy Price, Sara Riggare, Janice Tufte and 2 more

Erratum issuedAbstract readLetter
PubMed Full text at PMC Publisher
In one paragraph

Article in Research involvement and engagement, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing 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

8 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. Review
  8. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

12 authors.

Dawn P RichardsCanadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis, University of British Columbia, Vancouver, BC, Canada. dawn.p.richards@gmail.com.
Hetty MulhallCanadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis, University of British Columbia, Vancouver, BC, Canada.
Joletta BeltonPatient Partner and Patient Author, Fraser, CO, USA.
Savia de SouzaPatient Partner and Patient Author, London, UK.
Trudy FlynnPatient Partner and Patient Author, Halifax, NS, Canada.
Alex HaagaardPatient Partner and Patient Author, Kingston, ON, Canada.
Linda HunterPatient Partner and Patient Author, Ottawa, ON, Canada.
Amy PricePatient Author, London, UK.
Sara RiggarePatient Partner and Patient Author, Stockholm, Sweden.
Janice TuftePatient Partner and Patient Author, Seattle, WA, USA.
Rosie TwomeyCanadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis, University of British Columbia, Vancouver, BC, Canada.
Karim M KhanCanadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis, University of British Columbia, Vancouver, BC, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Research projects, initiatives and conferences that include patients as partners rather than as participants are becoming more common. Including patients as partners (what we will call 'patient partners') is an approach called patient engagement or involvement in research, and we will call it patient engagement throughout this paper. Patient engagement moves traditional health research conferences and events to include a broader audience for their knowledge exchange and community building efforts, beyond academics and healthcare professionals. However, there are few examples of conferences where patients are given the opportunity to fully lead. Our conference went beyond patient engagement - it was patient-led. Patient partners conceived, planned, and decided on all aspects of a virtual conference.We present the work and processes we undertook throughout 2023 to create and produce a free conference called "PxP: For patients, by patients" or PxP for short, with a tagline of "Partnering to make research stronger." PxP was patient-led and about patient engagement in research rather than a specific disease or condition. PxP was supported by the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis. The PxP website, known as the PxP Hub, now houses the conference recordings along with resources about patient engagement in research. These resources were recommended by the PxP Steering Committee members, speakers, and others who attended the 2023 conference. Here we lead you through how the idea for PxP was generated; how the international patient partner Steering Committee was convened and supported; how PxP was brought to life over nine months; the PxP 3-day event and feedback collected to improve future efforts; trade-offs, challenges and learnings; and resources required to support this type of event. We close with what the future holds for PxP in 2024 and beyond.It's time to elevate patients into leadership roles for conferences and events, and we encourage you to adopt the PxP ethos by using or adapting our approach and resources to support your opportunity.

Indexed as

Consumer involvementCo-productionPatient and public involvementPatient authorPatient engagement in researchPatient-led conferencePatient partnerPatientsIncludedService user research

Identifiers

PMID39075576
PMCPMC11287933

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.