Report Finds Patient Involvement Critical to Overall Care
Important Findings Cited in New Report from The National Working Group on Evidence-Based Health Care
Contact: Eileen Sexton, (703) 837-4783 or esexton@mentalhealthamerica.net
ALEXANDRIA, Va. (August 13, 2008) - The person who has the most at stake when it comes to healthcare decisions-the patient-should be involved in research, advocacy and all segments of the health care system, according to a key finding of a report released today by The National Working Group on Evidence-Based Health Care. The Role of the Patient/Consumer in Establishing a Dynamic Clinical Research Continuum: Models of Patient/Consumer Inclusion describes successful examples of groundbreaking patient/consumer engagement in evidence-based healthcare. Designed for patients/consumers, providers and decision-makers, this report identifies best practices for meaningfully involving patients/consumers, especially given discussions about increasing the U.S. capacity for comparative effectiveness research and the potential for a new centralized entity to conduct the research.
"Patient/consumer involvement is critical to crafting informed, balanced and effective health care decision-making," said David Shern, President and CEO of Mental Health America, which convenes the Working Group. "We must work to ensure a meaningful role for patients and consumers in all aspects of comparative effectiveness research, from research design to the implementation and evaluation of the findings. This report guides us to engaging patient/consumer voices into the discussion of their care."
Key findings in the report call for broad patient and consumer involvement in the following areas:
- Governance and Accountability - Consumers/Patients Must Have a Seat at the Table: It is important for patients/consumers to pursue positions on governing boards to ensure that the patient/consumer perspective influences each organization's activities.
- Research Prioritization - Patients/Consumers Must Directly and Indirectly Suggest Research Topics: It is the responsibility of patients/consumers to seek opportunities that influence research topics to ensure that the topics are relevant and appropriately address patient/consumer needs.
- Research Study Development - Patient/Consumer Participation in Study Design Demands Institutional Resources: Research organizations should be accountable for providing patients/consumers with the appropriate resources to successfully engage in study design activities. Additionally, a lack of expertise in a specific discipline should not exclude patients/consumers from participating.
- Translation and Dissemination - Key Messages Must Be Developed with Patient/Consumer Input: The patient/consumer perspective should be incorporated regardless of the intended audience, as it will promote the appropriate use of evidence in advocacy, and maintains the patient/consumer perspective in clinical decisions.
- Implementation - Patient and Consumer Perspectives Must be Expanded and Emphasized in the Implementation of Evidence: Patient/consumer inclusion during the implementation phase should be emphasized, as implementation has the most direct impact on the delivery of care to patients/consumers.
The report builds off a March 2008 Working Group forum that promoted the inclusion of patients and consumers throughout the research process. Five organizations that engage patients/consumers in conducting research are featured in this report, ranging from large, publicly-funded health technology assessment groups to small, independent, disease-specific research programs. These organizations highlight a variety of paradigms and best practices for gaining patient and consumer perspectives in research.
About the Working Group
The National Working Group on Evidence Based Health Care represents consumers, caregivers, practitioners and researchers committed to promoting accurate and appropriate evidence-based policies and practices that improve the quality of health care services in the United States. In addition to Mental Health America, Working Group members include more than 40 patient and disease advocacy groups including The Epilepsy Foundation, Breast Cancer Network of Strength, American Psychiatric Association, and the Asthma and Allergy Foundation of America.
To download a copy of the report and learn more about the National Working Group on Evidence-Based Health Care, visit http://www.evidencebasedhealthcare.org/.
Mental Health America is the country's leading nonprofit dedicated to helping all people live mentally healthier lives. With more than 320 affiliates nationwide, we represent a growing movement of Americans who promote mental wellness for the health and well-being of the nation - everyday and in times of crisis.
###
