Patients as research partners; how to value their perceptions, contribution and labor?

Area of Science:

• Health Research
• Citizen Science
• Participatory Research

Background:

• Citizen science engages the public in research for various reasons, including increased access, community value immersion, and science democratization.
• Patient engagement in research (PER) specifically involves patient partners to leverage their lived experiences with diseases.
• Historically, patient partner involvement has ranged from tokenism to full empowerment, with the latter being the preferred ideal.

Purpose of the Study:

• To argue for acknowledging and recognizing the value of patient partners' experiential knowledge in health research.
• To explore diverse forms of recognition for patient partners in research (PPR).
• To consider the applicability of these recognition models to the broader citizen science field.

Main Methods:

• The study presents an argument based on the existing literature and ethical considerations of patient engagement in research.
• It involves a qualitative exploration of different types of recognition.
• The methodology includes a discussion of potential applications to broader citizen science initiatives.

Main Results:

• The experiential knowledge of patient partners is valuable and should be acknowledged through its use and recognition.
• Various forms of recognition exist, including scientific, financial, personal, and altruistic.
• Research applications can also serve as a beneficial outcome and form of recognition.

Conclusions:

• Patient partners' contributions to health research warrant formal recognition beyond just utilizing their knowledge.
• A multi-faceted approach to recognition, encompassing scientific, financial, and personal aspects, is proposed.
• The principles of recognizing patient partners could potentially be extended to other citizen science domains.