The Patient Engagement Studio (PES) offers services to combine patient and caregiver experience with researchers, businesses and other relevant stakeholders to benefit medical research.
Integration of research and business initiatives continues to grow since the founding of the Patient-Centered Outcomes Research Institute (PCORI).
Projects significantly contributing to the research include:
- Development and prioritization of research or project questions.
- Development and prioritization of study design and selection of study outcomes.
- Tailoring intervention to meet patients’ needs and preferences.
- Data collection and analysis plan, reviewing and interpreting results and translation and dissemination of results.
Positive results from patient engagement are well-documented and range from practicality (e.g., more relevant research questions), recruitment (e.g., increased enrollment and attrition), data interpretation (e.g., more meaningful analyses) and dissemination (e.g., more understandable outcomes).
Patient engagement efforts in research provide valuable contributions to research achievability, acceptability, rigor and relevance. An evaluation of the impact of PCORI noted that PCORI engagement efforts resulted in “more relevant research through better alignment with patients’ and clinicians’ real-world needs and concerns.”
Patient engagement also has the potential to influence businesses that are developing health care products and services where the patient or caregiver may be the end user.
The Patient Centered Outcomes Research Institute (PCORI) provides general guidance on how health service practitioners may comprehensively integrate patients into the research process. This rubric guides researchers toward more effectively involving patients in research.