Recommendations for successful involvement of patient partners in complex intervention research: a collaborative...

Area of Science:

• Health Services Research
• Patient and Public Involvement (PPI)
• Complex Intervention Research

Background:

• Patient and public involvement in health research is an emerging field in Denmark.
• A 2021 conference focused on involving patients as partners in complex intervention research.

Purpose of the Study:

• To identify challenges and initiatives for patient partner involvement in complex intervention research.
• To develop recommendations for establishing successful patient-researcher partnerships.

Main Methods:

• A collaborative learning process involving 140 researchers.
• A workshop with four patient partners to identify challenges and initiatives from their perspective.
• Feedback from patient partners on researcher-identified issues and initiatives.

Main Results:

• Researchers identified time, recruitment, ethics, power, and inequality as key challenges.
• Patient partners highlighted communication, information handling, and recruitment challenges.
• Patient partners confirmed researcher-identified challenges and contributed to shaping recommendations.

Conclusions:

• A collaborative learning approach is effective for patient partner involvement.
• Three key recommendations were developed: specific involvement programs, ethical guidelines, and a national strategy.
• A joint workshop is proposed to further develop these recommendations.