ERS Annual Congress Amsterdam

26–30 September 2015

EDUCATIONAL MATERIAL

How to involve patients in research projects

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Wednesday, 30 September 2015

07:00 – 08:15

Room Emerald RAI

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How to involve patients in research projects

AIMS: To show why patient involvement is important in research, how to find patients who are able to

take part in projects, and how to prepare them for the role; to delineate what funding bodies are

looking for and how to fulfil their requirements in an application; and to describe how to effectively

involve patients through the full lifecycle of the project to ensure that their inclusion is meaningful and

effective.

TARGET AUDIENCE: Anyone involved in research, including basic scientists, clinical researchers,

research fellows and trainees.

CHAIRS: D. Smyth (Dundalk, Ireland)

PROGRAMME

07:00 Introduction

07:10 The benefits and challenges of involving patients as project partners:

the professional perspective

P. Sterk (Amsterdam, Netherlands)

07:35 The benefits and challenges of involving patients as project partners:

the patient perspective

D. Supple (Newport, United Kingdom)

08:00 Discussion

BOOKLET CONTENTS PAGE

Additional resources 5

Faculty disclosures 6

Faculty contact information 7

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Recommended reading list and E-learning resources

1. Supple D, Roberts A, Hudson V, Masefield S, Fitch N, Rahmen M, Flood B, de Boer W, Powell

P, Wagers S and on behalf of the U-BIOPRED PIP group. From tokenism to meaningful

engagement: best practices in patient involvement in an EU project. Research Involvement and

Engagement 2015, 1:5 doi:10.1186/s40900-015-0004-9

http://www.researchinvolvement.com/content/1/1/5

2. Chalmers I: What do I want from health research and researchers when I am a patient. BMJ 1995,

310:1315-1318.

3. Coulter A: Patient engagement: why is it important? In Healthy democracy: the future of

involvement in health and social care. Edited by Andersson E, Tritter J, Wilson R. NHS, The

National Centre for Involvement, London; 2006.

4. Domecq JP, Prutsky G, Elraiyah T, et al. Patient engagement in research: a systematic review.

BMC Health Serv Res. 2014;14:89.., www.biomedcentral.com/content/pdf/1472-6963-14-89.pdf

5. Boote J, Wong R, Booth A. Talking the talk or walking the walk: a bibliometric review of the

literature on public involvement in health research published between 1995 and 2009. Health

Expect. doi:.10.1111/hex.12007

6. Barber R, Boote J, Parry G, et al.: Can the impact of public involvement on research be

evaluated? A mixed methods study. Health Expect. 2012, 15:229-241. Mathie E, Wilson P,

7. Caron-Flinterman JF, et al.: Patients' priorities concerning health research: the case of asthma and

COPD research in the Netherlands. Health Expect 2005, 8:253-263.

8. Bel EH, Sousa A, Fleming L, et al.: Diagnosis and definition of severe refractory asthma: an

international consensus statement from the Innovative Medicine Initiative (IMI)., Thorax 2011,

66:910-917.

9. Report on patient involvement in key IMI projects. UBIOPRED features as an exemplar for PPI

http://www.imi.europa.eu/sites/default/files/uploads/documents/Publications/SurveyPatientsCalls

1to6.pdf

Other projects that are not achieving as much PPI impact are also highlighted:

10. De Wit MP, Elberse JF, Broerse JE, Abma TA. Do not forget the professional: the value of the

the FIRST model for guiding the structural involvement of patients in rheumatology research.

Health Expect 2015; 18(4):489-503.

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Faculty disclosures

There are no faculty disclosures for this session.

6

Faculty contact information

Mr. Dan Smyth

European Lung Foundation

442 Glossop Road

S10 2PX Sheffield

UNITED KINGDOM

dan.smyth@europeanlung.org

Prof. Dr Peter Sterk

Department of Pulmonology, F5-259

Academic Medical Center

University of Amsterdam

P.O. Box 22700

1100 DE Amsterdam

NETEHERLANDS

p.j.sterk@amc.nl

Mr. David Supple

TF10 7HB Newport

UNITED KINGDOM

davidsupple@gmail.com

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