Engaging stakeholders in pharmacoepidemiology research: Current state and recommendations

Area of Science:

• Pharmacoepidemiology
• Patient Engagement
• Health Research

Background:

• Patient-centered care and shared decision-making are increasingly emphasized.
• The International Society of Pharmacoepidemiology Workgroup on Patient Engagement was formed to address this.
• Assessing stakeholder involvement in pharmacoepidemiology research is crucial.

Purpose of the Study:

• To assess the extent of patient and stakeholder engagement in pharmacoepidemiology research.
• To provide recommendations for enhancing engagement in the field.
• To identify current practices and gaps in stakeholder involvement.

Main Methods:

• A systematic review of MEDLINE and EMBASE databases (2005-2016) was conducted.
• Studies on stakeholder involvement in pharmacoepidemiologic research were identified and screened.
• Data on research focus, stakeholder roles, and engagement strategies were abstracted and summarized.

Main Results:

• Out of 5717 references, 11 studies were included in the final analysis.
• Stakeholders, primarily patients, advocacy groups, and healthcare professionals, were involved in research agendas and providing feedback.
• Engagement in study design and implementation was often not reported.

Conclusions:

• Few pharmacoepidemiology studies explicitly report patient or stakeholder engagement in design, analysis, or reporting.
• There are significant opportunities to increase both the level of stakeholder engagement and the transparency of its reporting.
• Improving engagement can enhance the patient-centeredness and relevance of pharmacoepidemiology research.