Literature DB >> 27122611

On the path to a science of patient input.

Margaret Anderson1, K Kimberly McCleary1.   

Abstract

It is early days in the creation of a science of patient input. Participants are establishing rigorous methods to better integrate patient perspectives, needs, and priorities throughout biomedical and bioengineering R&D and care delivery to patients. To assess progress and unmet needs, FasterCures tracked more than 70 collaborative initiatives clustered in six categories that are defining and shaping this developing field. No longer is patient engagement a fanciful notion as it was at the start of our journey in 2003, and the rush of activity is welcome and vital.
Copyright © 2016, American Association for the Advancement of Science.

Entities:  

Mesh:

Year:  2016        PMID: 27122611     DOI: 10.1126/scitranslmed.aaf6730

Source DB:  PubMed          Journal:  Sci Transl Med        ISSN: 1946-6234            Impact factor:   17.956


  18 in total

1.  Reflections on the Evolution of Patient Engagement in Drug Development.

Authors:  Kenneth Getz
Journal:  Pharmaceut Med       Date:  2019-06

2.  Developing a patient and family research advisory panel to include people with significant disease, multimorbidity and advanced age.

Authors:  Laura B Portalupi; Carmen L Lewis; Carl D Miller; Kerry L Whiteman-Jones; Kay A Sather; Donald E Nease; Daniel D Matlock
Journal:  Fam Pract       Date:  2017-06-01       Impact factor: 2.267

Review 3.  Considerations for Conducting Bring Your Own "Device" (BYOD) Clinical Studies.

Authors:  Charmaine Demanuele; Cynthia Lokker; Krishna Jhaveri; Pirinka Georgiev; Emre Sezgin; Cindy Geoghegan; Kelly H Zou; Elena Izmailova; Marie McCarthy
Journal:  Digit Biomark       Date:  2022-07-04

4.  Measuring the Impact of Patient-Engaged Research: How a Methods Workshop Identified Critical Outcomes of Research Engagement.

Authors:  Ellis C Dillon; Leah Tuzzio; Sarah Madrid; Heather Olden; Robert T Greenlee
Journal:  J Patient Cent Res Rev       Date:  2017-11-06

5.  Precision engagement: the PMI's success will depend on more than genomes and big data.

Authors:  Jennifer K Wagner; Cathryn Peltz-Rauchman; Alanna Kulchak Rahm; Christine C Johnson
Journal:  Genet Med       Date:  2016-10-27       Impact factor: 8.822

6.  Self-reported dietary adherence, disease-specific symptoms, and quality of life are associated with healthcare provider follow-up in celiac disease.

Authors:  Jacob J Hughey; Bonnie K Ray; Anne R Lee; Kristin N Voorhees; Ciaran P Kelly; Detlef Schuppan
Journal:  BMC Gastroenterol       Date:  2017-12-11       Impact factor: 3.067

Review 7.  Reflections on the Future of Pharmaceutical Public-Private Partnerships: From Input to Impact.

Authors:  Remco L A de Vrueh; Daan J A Crommelin
Journal:  Pharm Res       Date:  2017-06-06       Impact factor: 4.200

8.  The 5th Annual One Mind Summit: Lessons Learned About "Science Informing Brain Health Policies and Practice".

Authors:  Ramona Hicks; Stephen Johnson; Amy C Porter; Douglas Zatzick
Journal:  J Neurotrauma       Date:  2017-05-17       Impact factor: 5.269

9.  Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI's Patient Groups and Clinical Trials Project.

Authors:  Bennett Levitan; Kenneth Getz; Eric L Eisenstein; Michelle Goldberg; Matthew Harker; Sharon Hesterlee; Bray Patrick-Lake; Jamie N Roberts; Joseph DiMasi
Journal:  Ther Innov Regul Sci       Date:  2017-07-17       Impact factor: 1.778

10.  Marking 15 years of the Genetic and Rare Diseases Information Center.

Authors:  Janine Lewis; Michelle Snyder; Henrietta Hyatt-Knorr
Journal:  Transl Sci Rare Dis       Date:  2017-05-25
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