[CODATA-international] SciDataCon 2022 Session “Patient Partnerships” Applications Open!

[Asha CODATA]

The session “Patient Partnerships: Practices in Participant-Engaged Health
Research” is looking for applications from groups doing participant-engaged
health research! This session is for “practice presentations” and will
include 4-5 short (5-10 minute) presentations on data projects and
participant engagement and partnership efforts, followed by a round-robin
delving into key questions in the field.

*Abstract:*
Too often, data is treated as a commodity collected from faceless masses
who have no rights or ownership of their data, its uses, or resulting
products.  This problem is particularly challenging in health data where
the data is both personal and sensitive in nature. It is inextricably
linked with a human, while at the same time representing an extremely
versatile resource separate from the person from whom it was generated. As
health sciences shift perspective from single-hypothesis studies to
population-level understanding of health, there is growing acknowledgement
that data-generating participants, whether they be people explicitly
performing testing for studies or passively contributing data to cohort
studies through electronic health records, have both an interest and a
right to be involved in that data use.

Techniques and practices to engage participants as partners enhances
recruitment and data diversity in addition to being an ethical best
practice. Participants who are engaged and informed are more likely to
provide better quality data for longer and serve as the lifeblood of data
scientists and research data gathering programs. *This session invites
speakers from programs that focus on participants as active partners in
research to present on best practices and lessons learned in engagement,
retention, and shifting culture from data extraction to data enrichment.*

Submit your presentation to this open session at
https://www.scidatacon.org/IDW-2022/submit/ by April 25th! For any
questions please feel free to contact the session organiser at
Claire.schulkey at nih.gov

Best wishes,
Asha
on behalf of the Session organiser

-- 
___________________________

Asha Law | Program Assistant, CODATA | http://www.codata.org

E-Mail: asha at codata.org
Tel (Office): +33 1 45 25 04 96

CODATA (Committee on Data of the International Council for Science), 5 rue
Auguste Vacquerie, 75016 Paris, FRANCE
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