Consent to discuss participation in research: a pilot study

Area of Science:

• Clinical Research
• Health Services Research
• Patient Engagement

Background:

• Equitable patient access to research studies is crucial but challenging in clinical settings.
• Debate exists on optimal methods for discussing research participation with patients.

Purpose of the Study:

• To assess the feasibility of an opt-in approach for discussing research participation using electronic health records.
• To gather patient and clinician feedback on the opt-in method.

Main Methods:

• A 6-month pilot involving staff completing a consent form for patients to discuss research.
• Data collection via staff online surveys and patient focus groups across four pilot sites.

Main Results:

• Only 11% of patients had the form completed, and 8% opted-in to learn about research.
• Low uptake attributed to staff time constraints, low priority, and poor electronic system user experience.
• Patients generally approved but suggested improvements.

Conclusions:

• The opt-in approach demonstrated low effectiveness for increasing research access.
• Alternative strategies, like opt-out methods, require consideration for broader research participation.