Patient Empowerment Initiative (PEI)
Many patient-related initiatives are currently underway across the enterprise. However, there is no clinical research or healthcare-wide mechanism for bringing the stakeholders together to work out how best to incorporate the perspectives, needs and voice of patients, how best to involve patients in research, how to measure the impact of the empowerment and engagement of patients in research and care.
While the multiplicity of patient centricity efforts is heartening, doing so without integrating these efforts into the larger biomedical and healthcare environment results in the siloed environment is detrimental to progress.
ACRES, as a ‘system of systems’ or meta-systems-based organization, recognizes the need to integrate patient centricity efforts across the research and healthcare environment. Also, focusing on the patient alone, without examining the needs and priorities of the other stakeholders within the patient research and care eco-system, will make embedding patient needs permanently into research and care impossible.
ACRES efforts focus on:
- The comprehensive priorities and needs of patients as well as other stakeholders in clinical research and healthcare
- Defining the ideal principles regarding and role(s) for patients in both
- Development of implementable actions inherent in the patient and other stakeholder roles.
- Testing the feasibility of solutions proposed by various stakeholders.
- Facilitation of consensus with respect to implementable solutions.
Growing out of these discussions, ACRES PEI can serve as a mechanism for collecting, synthesizing and testing best practice methods of involving patients in clinical research.
Given ACRES’ matrix approach to developing and connecting all elements of a clinical research system, thorny multi-stakeholder issues that heavily impact patient engagement, such as ethics, technology, or protocol design in research, can be recognized and discussed.
The first PEI project is the development of a Patient Satisfaction Measurement tool, assessing the experience of a patient and caregivers in a clinical trial.
The Steering Committee also integrates their PEI efforts with other ACRES Initiatives. E.g., the Product Safety Culture Initiative (PSCI) and the Site Accreditation and Standards Initiative (SASI).