A tall order on a tight timeframe: stakeholder perspectives on comparative effectiveness research using electronic...

Area of Science:

• Health Services Research
• Biomedical Informatics
• Translational Science

Background:

• The AcademyHealth Electronic Data Methods Forum fosters dialogue on using electronic clinical data (ECD) for comparative effectiveness research (CER), patient-centered outcomes research, and quality improvement.
• A mixed-method needs assessment was conducted to understand stakeholder perspectives on ECD infrastructure, knowledge gaps in CER, and learning health system expectations.

Purpose of the Study:

• To assess stakeholder views on developing infrastructure for CER using ECD.
• To identify current knowledge gaps in CER.
• To understand stakeholder expectations for a learning health system.

Main Methods:

• Conducted 50 semi-structured stakeholder interviews across seven groups (government, business/payer, industry, healthcare delivery, patient/consumer, nonprofit/policy, research) from August to November 2011.
• Utilized a semi-structured interview guide and a short survey.
• Employed NVivo software for qualitative data analysis of transcripts and integrated quantitative survey data.

Main Results:

• Stakeholders have high expectations for CER using ECD to overcome traditional research limitations and generate decision-making evidence.
• Key challenges identified include developing governance, ensuring data quality, and addressing confounding in observational data.
• Defining 'patient-centeredness' in CER using ECD remains complex; improving translation and dissemination of CER is crucial for mitigating negative perceptions and fostering a 'culture shift' towards collaborative science.

Conclusions:

• Stakeholders recognize the potential of ECD for CER but highlight significant challenges in implementation, data quality, and conceptualization.
• Addressing these challenges requires developing appropriate governance, robust methods, and a cultural shift towards collaborative research.
• Effective translation and dissemination of CER findings are essential for practical application and improving public perception.