Literature DB >> 29911115

Transforming research: engaging patient advocates at all stages of cancer research.

AnneMarie Ciccarella1, Alicia C Staley2, Aime T Franco3.   

Abstract

In recent years there has been a push to include patients and advocates in clinical research, including in clinical trial design and approval processes. Additionally, increased advocate-driven research funding has led to seats for advocates in the funding review process. However, despite advances that include having patients and advocates involved in clinical research projects that may directly, or eventually, affect their care and treatment, we have much further to go to make this a truly inclusionary participation in research. We have even further to go to actively incorporate patients and advocates throughout the research continuum. Here we review and present current programs and projects that have successfully incorporated patients and advocates into translational research, and propose mechanism and strategies to actively engage patients throughout the research continuum. Our goal in translational cancer research is to improve outcomes for cancer patients. To more successfully and quickly meet this objective we should incorporate patient driven research questions earlier in the process, specifically at the level of basic benchtop research.

Entities:  

Keywords:  Cancer; advocacy; patient centered-outcomes

Year:  2018        PMID: 29911115      PMCID: PMC5985270          DOI: 10.21037/atm.2018.04.46

Source DB:  PubMed          Journal:  Ann Transl Med        ISSN: 2305-5839


  2 in total

1.  Demand cancer drugs that truly help patients.

Authors:  Ajay Aggarwal
Journal:  Nature       Date:  2018-04       Impact factor: 49.962

2.  Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey.

Authors:  Deanna J Attai; Michael S Cowher; Mohammed Al-Hamadani; Jody M Schoger; Alicia C Staley; Jeffrey Landercasper
Journal:  J Med Internet Res       Date:  2015-07-30       Impact factor: 5.428

  2 in total
  10 in total

1.  Connecting Students with Patients and Survivors to Enhance Cancer Research Training.

Authors:  Robert N Riter; Robert S Weiss
Journal:  Cancer Res       Date:  2019-07-31       Impact factor: 12.701

Review 2.  Promoting Scientist-Advocate Collaborations in Cancer Research: Why and How.

Authors:  Jeannine M Salamone; Wanda Lucas; Shelley B Brundage; Jamie N Holloway; Sherri M Stahl; Nora E Carbine; Margery London; Naomi Greenwood; Rosa Goyes; Deborah Charles Chisholm; Erin Price; Roberta Carlin; Susan Winarsky; Kirsten B Baker; Julia Maues; Ayesha N Shajahan-Haq
Journal:  Cancer Res       Date:  2018-08-17       Impact factor: 12.701

3.  Utilization of an Electronic Patient-Reported Outcome Platform to Evaluate the Psychosocial and Quality-of-Life Experience Among a Community Sample of Ovarian Cancer Survivors.

Authors:  Fay J Hlubocky; Christopher K Daugherty; Jeffery Peppercorn; Karen Young; Kristen E Wroblewski; Seiko Diane Yamada; Nita K Lee
Journal:  JCO Clin Cancer Inform       Date:  2022-08

4.  Putting patients first: development of a patient advocate and general practitioner-informed model of patient-centred care.

Authors:  Bryce Brickley; Lauren T Williams; Mark Morgan; Alyson Ross; Kellie Trigger; Lauren Ball
Journal:  BMC Health Serv Res       Date:  2021-03-20       Impact factor: 2.655

Review 5.  Partnering with frail or seriously ill patients in research: a systematic review.

Authors:  Claire Ludwig; Ian D Graham; Wendy Gifford; Josee Lavoie; Dawn Stacey
Journal:  Res Involv Engagem       Date:  2020-09-11

6.  Effective stakeholder engagement: design and implementation of a clinical trial (SWOG S1415CD) to improve cancer care.

Authors:  Sarah Barger; Sean D Sullivan; Ari Bell-Brown; Brad Bott; Anne Marie Ciccarella; John Golenski; Mark Gorman; Judy Johnson; Karma Kreizenbeck; Florence Kurttila; Ginny Mason; Jamie Myers; Carole Seigel; James L Wade; Guneet Walia; Kate Watabayashi; Gary H Lyman; Scott D Ramsey
Journal:  BMC Med Res Methodol       Date:  2019-06-11       Impact factor: 4.615

7.  Global Patient Involvement in Sarcoma Care-A Collaborative Initiative of the Connective Tissue Oncology Society (CTOS) & Sarcoma Patients EuroNet (SPAEN).

Authors:  Bernd Kasper; Kathrin Schuster; Roger Wilson; Sorrel Bickley; Jean-Yves Blay; Denise Reinke; Markus Wartenberg; Rick Haas
Journal:  Cancers (Basel)       Date:  2022-02-09       Impact factor: 6.639

Review 8.  Improving the odds together: a framework for breast cancer research scientists to include patient advocates in their research.

Authors:  Hillary Stires; Igor Bado; Thelma Brown; Martha Carlson; Isaac S Chan; Gloria V Echeverria; Andrew J Ewald; Bora Lim; Carla Lloyd; Julia Maues; Steffi Oesterreich; Robert N Riter; Kelly Shanahan; Alana L Welm; Josh Newby
Journal:  NPJ Breast Cancer       Date:  2022-06-30

9.  'Experimental pregnancy' revisited.

Authors:  Anne Drapkin Lyerly
Journal:  Theor Med Bioeth       Date:  2022-07-20

10.  Challenges and Opportunities in Social Media Research in Gastroenterology.

Authors:  Joy W Chang; Evan S Dellon
Journal:  Dig Dis Sci       Date:  2021-05-29       Impact factor: 3.199

  10 in total

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