Patient Empowerment Initiative (PEI)
Many patient-related initiatives are currently underway across the enterprise. However, there are still no universally accepted principles or definitions of patient involvement in either research or healthcare (whether patient-empowerment, patient-centered, patient engagement, patient centricity, patient voice). This includes distinctions between patients as end users of product vs. patients as subjects in clinical trials vs. patients as customers of clinical care.
Similarly, 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.
Finally, 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 so detrimental to progress.
ACRES Role in Patient Empowerment
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.
Given ACRES history of building alliances—bringing together all of the stakeholders in the clinical research enterprise to address system needs—ACRES PEI is optimally positioned to create a “home” for comprehensive multi-stakeholder dialogue on these issues.
Patient Empowerment Environment
ACRES Patient Empowerment Efforts
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.
- Steering Committee, representative of the clinical research and healthcare spectrum with heavier representation by patient representatives, sets the Work Groups’ topics, goals and agendas and oversees the effort. Topics and Work Groups change over time.
- Task-specific members who work on one or more of specific tasks and topic areas.
Topic Areas include (but are not limited to):
- Informed consent
- Protocol design
- Understanding the patient/subject/participant experience
- Issues around patients connecting with patient groups or communities
- Direct patient input vs remote data mining
- Face-to-face vs virtual contact in supporting and understanding patient perspectives
- Cultural and demographic diversity
- Study participation logistics and the impact on patients
- Privacy and confidentiality
- Gap between creation and execution of patient centric innovations
- Remote/personal sensor technology
- Providing study results to patient/subjects
- Impact of trust and professionalism on healthcare and research
- Subject perception of recruitment, retention and compliance
- Access to and management of health information/EHRs
Potential Tasks include:
- Research and consolidate existing information on needs and priorities of patient/researcher/healthcare providers
- Research and consolidate existing information on current Patient Centricity activities of patient/researcher/healthcare providers
- Fill in knowledge gaps through outreach (surveys, interviews, t-cons, focus groups), utilizing ACRES BlueCloud technology
- Multi-stakeholder Summits devoted to generating Solutions for meeting patient and other stakeholder needs
- Develop implementation plans
- Reality test their outcomes
- Distribute information, tools and technologies to stakeholders throughout ongoing Patient Engagement activities
- 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).