Literature DB >> 30231692

Improving Patient Involvement in Medicines Research and Development:: A Practical Roadmap.

Jan Geissler1, Bettina Ryll2,3, Susanna Leto di Priolo4, Mary Uhlenhopp5,6.   

Abstract

The value of patient involvement (PI) in medicines research and development (R&D) is increasingly recognized by all health stakeholders. Despite numerous ongoing PI initiatives, PI so far lacks structure and consistency in approach. Limited formal documentation of PI activities further hampers the sharing of experience and learnings, preventing timely and systematic implementation. This article summarizes the outcomes of several multistakeholder discussions during 2013-2016 in a practical roadmap for PI in medicines R&D. The roadmap highlights specific opportunities for PI along the 4 key stages of the medicines R&D life cycle and is illustrated with concrete examples. This roadmap's aim is to provide a tool to facilitate PI during medicines research and development and is being shared to encourage implementation and further refinement.

Entities:  

Keywords:  patient input; patient involvement roadmap

Year:  2017        PMID： 30231692     DOI： 10.1177/2168479017706405

Source DB:  PubMed          Journal:  Ther Innov Regul Sci        ISSN： 2168-4790            Impact factor:   1.778


  23 in total

Review 1.  Key Steps Toward a Promotional Communications Strategy: Collaboration Best Practices for Teams Creating Promotional Materials and Regulatory Colleagues.

Authors:  Mary L Raber-Johnson; Mark Stinson; Carlotta Dillon; George J Wan
Journal:  Ther Innov Regul Sci       Date:  2021-03-15       Impact factor: 1.778

2.  From Testers to Cocreators-the Value of and Approaches to Successful Patient Engagement in the Development of eHealth Solutions: Qualitative Expert Interview Study.

Authors:  Steven Bourke; Christine Jacob; Sabina Heuss
Journal:  JMIR Hum Factors       Date:  2022-10-06

Review 3.  Practices of patient engagement in drug development: a systematic scoping review.

Authors:  Olga Zvonareva; Constanța Craveț; Dawn P Richards
Journal:  Res Involv Engagem       Date:  2022-06-29

4.  Monitoring and Evaluation of Patient Engagement in Health Product Research and Development: Co-Creating a Framework for Community Advisory Boards.

Authors:  Sevgi E Fruytier; Lidewij Eva Vat; Rob Camp; François Houÿez; Hilde De Keyser; Denise Dunne; Davide Marchi; Laura McKeaveney; Richard H Pitt; Carina A C M Pittens; Meagan F Vaughn; Elena Zhuravleva; Tjerk Jan Schuitmaker-Warnaar
Journal:  J Patient Cent Res Rev       Date:  2022-01-17

Review 5.  To what degree are orphan drugs patient-centered? A review of the current state of clinical research in rare diseases.

Authors:  Sally Lanar; Catherine Acquadro; James Seaton; Isabelle Savre; Benoit Arnould
Journal:  Orphanet J Rare Dis       Date:  2020-06-03       Impact factor: 4.123

6.  What do stakeholders expect from patient engagement: Are these expectations being met?

Authors:  Mathieu Boudes; Paul Robinson; Neil Bertelsen; Nicholas Brooke; Anton Hoos; Marc Boutin; Jan Geissler; Ify Sargeant
Journal:  Health Expect       Date:  2018-06-01       Impact factor: 3.377

7.  "Be an ambassador for change that you would like to see": a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease.

Authors:  Anna Ambrosini; Ros Quinlivan; Valeria A Sansone; Ingeborg Meijer; Guus Schrijvers; Aad Tibben; George Padberg; Maarten de Wit; Ellen Sterrenburg; Alexandre Mejat; Alexandra Breukel; Michal Rataj; Hanns Lochmüller; Raffaella Willmann
Journal:  Orphanet J Rare Dis       Date:  2019-06-07       Impact factor: 4.123

Review 8.  Translational precision medicine: an industry perspective.

Authors:  Dominik Hartl; Valeria de Luca; Anna Kostikova; Jason Laramie; Scott Kennedy; Enrico Ferrero; Richard Siegel; Martin Fink; Sohail Ahmed; John Millholland; Alexander Schuhmacher; Markus Hinder; Luca Piali; Adrian Roth
Journal:  J Transl Med       Date:  2021-06-05       Impact factor: 5.531

9.  EUPATI Guidance for Patient Involvement in Medicines Research and Development (R&D); Guidance for Pharmaceutical Industry-Led Medicines R&D.

Authors:  Kay Warner; Wolf See; David Haerry; Ingrid Klingmann; Amy Hunter; Matthew May
Journal:  Front Med (Lausanne)       Date:  2018-10-09

10.  Development and pre-testing of the Patient Engagement In Research Scale (PEIRS) to assess the quality of engagement from a patient perspective.

Authors:  Clayon B Hamilton; Alison M Hoens; Shanon McQuitty; Annette M McKinnon; Kelly English; Catherine L Backman; Tara Azimi; Negar Khodarahmi; Linda C Li
Journal:  PLoS One       Date:  2018-11-01       Impact factor: 3.240
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