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Table 2 Overview impact of patient involvement in basic research

From: Patient involvement in basic rheumatology research at Nijmegen: a three year’s responsive evaluation of added value, pitfalls and conditions for success

Personal impact

Societal impact

Researchers

PRPs

Research process

Patient target audience and general public

Holistic view

Attaining a more holistic view of people with a rheumatic condition: Patients get a face

Changing perceptions as the result of learning disease impact on daily life

Learning to explain research in lay language

Better lay summaries in grant applications

Better presentations for lay audiences

Prompted to consider clinical relevance of research

Getting detached from own research (helicopter view) and encouraged to look at research from a patient perspective

Better understanding of the societal impact of research

Better understanding of basic research

Research comes to life

To see the bigger picture

More realistic expectations: Understanding why research sometimes fails and why progress takes often a long time

Better understanding own disease

Understanding the importance of pathophysiological processes for explaining disease activity and for potential treatment options

Personal satisfaction

Sharing personal experience with fellow PRPs and researchers

Receiving recognition

Legitimacy

Broader stakeholder representation

Patients’ voices are heard

PRPs become sparring partner

Research agenda

Reality check: is research studying questions that are important to patients?

Identifying new research topics such as: Pathophysiological factors of fatigue (research proposal submitted)

Side effects of MTX (no follow-up)

Recruitment

PRPs reviewing patient information letters and other patient materials [not seen in this study]

Reduced gap between research and the public

Motivation

Enhanced motivation as result of better understanding of the clinical burden of disease

Improving health care

Better patient information as the result of PRPs reviewing lay summaries

PRPs and researchers giving presentations for scientific and patient audiences

Dissemination

PRPs giving interviews for media

Combined presentations on national symposia as well as internal educational meetings

  1. MTX = Methotrexate; PRPs = Patient Research Partner