Literature DB >> 25537464

The Benefits of Patient Involvement for Translational Research.

Lieke van der Scheer1, Elisa Garcia2, Anna Laura van der Laan3, Simone van der Burg2, Marianne Boenink3.   

Abstract

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement ('translation') of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration.

Entities:  

Keywords:  Patient experiential knowledge; Patient involvement; Patient involvement in research; Patient participation; Patient participation in science; Translational research

Mesh:

Year:  2017        PMID: 25537464     DOI: 10.1007/s10728-014-0289-0

Source DB:  PubMed          Journal:  Health Care Anal        ISSN: 1065-3058


  38 in total

Review 1.  Consumer involvement in health research: a review and research agenda.

Authors:  Jonathan Boote; Rosemary Telford; Cindy Cooper
Journal:  Health Policy       Date:  2002-08       Impact factor: 2.980

2.  Translational research and nursing science.

Authors:  Patricia A Grady
Journal:  Nurs Outlook       Date:  2010 May-Jun       Impact factor: 3.250

3.  Translational and clinical science--time for a new vision.

Authors:  Elias A Zerhouni
Journal:  N Engl J Med       Date:  2005-10-12       Impact factor: 91.245

4.  Principles and indicators of successful consumer involvement in NHS research: results of a Delphi study and subgroup analysis.

Authors:  Jonathan Boote; Rosemary Barber; Cindy Cooper
Journal:  Health Policy       Date:  2006-02       Impact factor: 2.980

5.  Patients and professionals as research partners: challenges, practicalities, and benefits.

Authors:  Sarah Hewlett; Maarten de Wit; Pam Richards; Enid Quest; Rod Hughes; Turid Heiberg; John Kirwan
Journal:  Arthritis Rheum       Date:  2006-08-15

6.  The experiential knowledge of patients: a new resource for biomedical research?

Authors:  J Francisca Caron-Flinterman; Jacqueline E W Broerse; Joske F G Bunders
Journal:  Soc Sci Med       Date:  2004-12-21       Impact factor: 4.634

Review 7.  Close to the bench as well as at the bedside: involving service users in all phases of translational research.

Authors:  Felicity Callard; Diana Rose; Til Wykes
Journal:  Health Expect       Date:  2011-05-25       Impact factor: 3.377

8.  The identification of topics for research that are important to people with ulcerative colitis.

Authors:  Mark R Welfare; Jackie Colligan; Sam Molyneux; Pauline Pearson; J Roger Barton
Journal:  Eur J Gastroenterol Hepatol       Date:  2006-09       Impact factor: 2.566

9.  Differences between perspectives of physicians and patients on anticoagulation in patients with atrial fibrillation: observational study.

Authors:  P J Devereaux; D R Anderson; M J Gardner; W Putnam; G J Flowerdew; B F Brownell; S Nagpal; J L Cox
Journal:  BMJ       Date:  2001-11-24

10.  Beyond bench and bedside: disentangling the concept of translational research.

Authors:  Anna Laura van der Laan; Marianne Boenink
Journal:  Health Care Anal       Date:  2015-03
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  12 in total

1.  A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".

Authors:  Camila Rosalinde van Ham; Vivian Wilhelmina Gerarda Burgers; Sophia Helena Eva Sleeman; Annemiek Dickhout; Niels Christiaan Gerardus Laurus Harthoorn; Eveliene Manten-Horst; Mies Christina van Eenbergen; Olga Husson
Journal:  Res Involv Engagem       Date:  2022-07-08

2.  Innovative Medical Technology and the Treatment Decision-Making Process in Multiple Sclerosis: A Focus Group Study to Examine Patient Perspectives.

Authors:  L A Visser; M De Mul; W K Redekop
Journal:  Patient Prefer Adherence       Date:  2021-05-07       Impact factor: 2.711

Review 3.  Patient involvement in clinical research: why, when, and how.

Authors:  José A Sacristán; Alfonso Aguarón; Cristina Avendaño-Solá; Pilar Garrido; Juan Carrión; Alipio Gutiérrez; Robert Kroes; Angeles Flores
Journal:  Patient Prefer Adherence       Date:  2016-04-27       Impact factor: 2.711

4.  Designing a tool to support patient and public involvement in research projects: the Involvement Matrix.

Authors:  Dirk-Wouter Smits; Karen van Meeteren; Martijn Klem; Mattijs Alsem; Marjolijn Ketelaar
Journal:  Res Involv Engagem       Date:  2020-06-16

5.  Relevant patient characteristics for estimating healthcare needs according to healthcare providers and people with type 2 diabetes: a Delphi survey.

Authors:  Dorijn F L Hertroijs; Martijn C G J Brouwers; Arianne M J Elissen; Nicolaas C Schaper; Dirk Ruwaard
Journal:  BMC Health Serv Res       Date:  2019-08-16       Impact factor: 2.655

6.  Using intervention mapping to develop an outpatient nursing nutritional intervention to improve nutritional status in undernourished patients planned for surgery.

Authors:  Harm H J van Noort; Maud Heinen; Monique van Asseldonk; Roelof G A Ettema; Hester Vermeulen; Getty Huisman-de Waal
Journal:  BMC Health Serv Res       Date:  2020-02-27       Impact factor: 2.655

Review 7.  Reviewing fair subject selection considerations for the unique case of post sequelae COVID-19 translational studies.

Authors:  E M Smith; E E Anderson; R Deer; J Prochaska; K Bohn; S Croisant
Journal:  J Clin Transl Sci       Date:  2022-07-07

8.  Study design and the estimation of the size of key populations at risk of HIV: lessons from Viet Nam.

Authors:  Ali Safarnejad; Wim Groot; Milena Pavlova
Journal:  BMC Int Health Hum Rights       Date:  2018-01-30

9.  Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research.

Authors:  Wendy Costello; Emma Dorris
Journal:  Health Expect       Date:  2019-10-18       Impact factor: 3.377

10.  The social aspects of genome editing: publics as stakeholders, populations and participants in animal research.

Authors:  Gail Davies; Richard Gorman; Renelle McGlacken; Sara Peres
Journal:  Lab Anim       Date:  2021-02-17       Impact factor: 2.471

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