Literature DB >> 27817863

Patient engagement: What partnering with patient in research is all about.

Lisa Duffett1.   

Abstract

The inclusion of patients on important decision related to healthcare has marked a significant 'patient revolution' during the last several decades. Patients now played active roles in personal health decisions, healthcare delivery and policy making, and the development of clinical practice guidelines. Such inclusion of patients' values has resulted in largely positive effects. The next wave of this 'patient revolution' is active and meaningful engagement with patients in health related research. Similar to other aspects of healthcare, it is increasingly recognized that experienced patients, their families, and caregivers, have a wealth of knowledge that comes from living and experiencing a medical condition. By understanding and valuing this experience-based knowledge, research priority setting, research study design, trial conduct, analysis of results and knowledge dissemination can be positively influenced. Patients can challenge our assumptions, align research with the needs of patients, increase transparency and trust in research, and lead to research that has a greater impact on the ultimate care of patients. This new approach to research is timed well with a larger movement towards simple, pragmatic clinical trials better reflecting realistic patient care. While there is still much to be learned about the best methods and exact impacts of patient engagement in research, preliminary results are promising and future venous thromboembolism research will likely benefit from the adoption of patient engagement in research.
Copyright © 2016 Elsevier Ltd. All rights reserved.

Entities:  

Keywords:  Clinical trials; Engagement; Patient-centred care; Patients; Research

Mesh:

Year:  2016        PMID: 27817863     DOI: 10.1016/j.thromres.2016.10.029

Source DB:  PubMed          Journal:  Thromb Res        ISSN: 0049-3848            Impact factor:   3.944


  35 in total

1.  Developing a Patient- and Family-Centered Research Agenda for Hospital Medicine: The Improving Hospital Outcomes through Patient Engagement (i-HOPE) Study.

Authors:  James D Harrison; Michelle Archuleta; Esther Avitia; Jim Banta; Joy Benn; Marisha Burden; Vineet Chopra; Rebecca Coker; Shaker Eid; Margaret C Fang; Kathlyn Fletcher; Julie Hagan; Jawali Jaranilla; Monalisa Mullick; Christopher Nyenpan; Lali Silva; Melissa Wurst; Georgiann Ziegler; Luci Leykum
Journal:  J Hosp Med       Date:  2020-06       Impact factor: 2.960

2.  The top research questions asked by people with lived depression experience in Alberta: a survey.

Authors:  Lorraine J Breault; Katherine Rittenbach; Kelly Hartle; Robbie Babins-Wagner; Catherine de Beaudrap; Yamile Jasaui; Emily Ardell; Scot E Purdon; Ashton Michael; Ginger Sullivan; Aakai'naimsskai'piiaakii Sharon Ryder Unger; Lorin Vandall-Walker; Brad Necyk; Kiara Krawec; Elizabeth Manafò; Ping Mason-Lai
Journal:  CMAJ Open       Date:  2018-09-28

3.  Patient-oriented pharmacy practice research: Why should we care?

Authors:  Yazid N Al Hamarneh; Zahava Rosenberg-Yunger; Arti Saxena; Nancy M Waite; Lisa Dolovich; Ross T Tsuyuki
Journal:  Can Pharm J (Ott)       Date:  2020-03-19

4.  Real World Survey of Patient Engagement Status in Clinical Research: The First Input from Japan.

Authors:  Nanae Tanemura; Tsuyoshi Sasaki; Junko Sato; Hisashi Urushihara
Journal:  Patient       Date:  2020-10       Impact factor: 3.883

5.  A stakeholder-driven approach to improve the informed consent process for palliative chemotherapy.

Authors:  Andrea C Enzinger; Jennifer K Wind; Elizabeth Frank; Nadine J McCleary; Laura Porter; Heather Cushing; Caroline Abbott; Christine Cronin; Peter C Enzinger; Neal J Meropol; Deborah Schrag
Journal:  Patient Educ Couns       Date:  2017-03-22

Review 6.  Patient-centred clinical trial design.

Authors:  Allison Tong; Nicole Scholes-Robertson; Carmel Hawley; Andrea K Viecelli; Simon A Carter; Adeera Levin; Brenda R Hemmelgarn; Tess Harris; Jonathan C Craig
Journal:  Nat Rev Nephrol       Date:  2022-06-06       Impact factor: 42.439

7.  Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research.

Authors:  James D Harrison; Wendy G Anderson; Maureen Fagan; Edmondo Robinson; Jeffrey Schnipper; Gina Symczak; Catherine Hanson; Martha B Carnie; Jim Banta; Sherry Chen; Jonathan Duong; Celene Wong; Andrew D Auerbach
Journal:  Patient       Date:  2018-08       Impact factor: 3.883

8.  What are the Relevant Outcomes of the Periodic Health Examination? A Comparison of Citizens' and Experts' Ratings.

Authors:  Isolde Sommer; Viktoria Titscher; Monika Szelag; Gerald Gartlehner
Journal:  Patient Prefer Adherence       Date:  2021-01-18       Impact factor: 2.711

9.  A study of elite sport-inspired coaching for patients after allogeneic hematopoietic stem cell transplantation.

Authors:  Sarah Cuvelier; Didier Blaise; Jean-Marie Boher; Charlène Villaron-Goetgheluck; Sebastien Justafré; Jihane Pakradouni; Angela Granata; Sabine Furst; Pierre Dantin; Patrice Viens; Sarah Calvin
Journal:  Bone Marrow Transplant       Date:  2021-07-14       Impact factor: 5.174

10.  Patient-Centered Identification of Meaningful Regulatory Endpoints for Medical Devices to Treat Parkinson's Disease.

Authors:  Heather L Benz; Brittany Caldwell; John P Ruiz; Anindita Saha; Martin Ho; Stephanie Christopher; Dawn Bardot; Margaret Sheehan; Anne Donnelly; Lauren McLaughlin; Brennan Mange; A Brett Hauber; Katrina Gwinn; William J Heetderks; Murray Sheldon
Journal:  MDM Policy Pract       Date:  2021-07-02
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