National Health Council Programs
The National Health Council engages in program initiatives designed to address health needs of people with chronic diseases and disabilities. All of the NHC’s programs are conducted using evidence-based research. The process typically includes a comprehensive literature review, focus groups, and message development on issues that are important to patients and family caregivers. The research findings help shape the NHC’s policy initiatives in these areas.
Comparative Effectiveness/Evidence-Based Medicine
Collaborative Research Database
Comparative Effectiveness/Evidence-Based Medicine
As health system payers struggle to control costs, they are continually looking for ways to improve cost effectiveness. Using an approach known as comparative effectiveness, evaluators review evidence on (and the relative costs and benefits of) a variety of treatments for a given diagnosis to determine a single treatment that appears most cost effective on average. This selected treatment is then used in coverage decisions and as a practice guideline to treat a specific condition.
While cost-effectiveness studies have a societal value, equally important is how this information is used to benefit the individual. According to the Institute of Medicine’s Roundtable on Evidence-Based Medicine, “value in health care is expressed as the physical health and sense of well being achieved relative to the costs. This means getting the right care at the right time to the right patient for the right price.” Such value cannot be accomplished if the social gain of managing health care costs is achieved at the expense of individual physical and mental health.
There is a potential for cost-effectiveness data based on averages to trump clinical decisions based on individual needs. The cost-effectiveness approach may not take into account that, even with an identical diagnosis among a group of patients, each patient’s reaction to medication or therapy, life stage, underlying health, social support, attitudes about health and illness, faith, culture, and other factors will influence what constitutes “appropriate treatment.”
The National Health Council seeks to reframe the issue of comparative effectiveness research and evidence-based medicine so that it is viewed from the perspective of patients with chronic conditions. We have completed a literature review and are conducting focus groups, message testing, and case studies to engage patients and family caregivers on this issue.
The ultimate goal is to develop policy and effect legislative change that improves the ability of patients and their providers to make effective and informed treatment choices that meet the unique needs and preferences of the patient.
This initiative is funded by grants from:
Biotechnology Industry Organization
Pharmaceutical Research and Manufacturers of America
Intellectual Property
The National Health Council wants to encourage the pharmaceutical industry to develop treatments and cures for previously neglected rare diseases and priority conditions through changes to intellectual property law as it pertains to medications, including pharmaceuticals and biologics. This issue is complex and multi-layered, and any legislative changes will have broad and significant implications for patients.
As a result, the National Health Council has launched a program to evaluate the best ways to address these issues. We are conducting a literature review on intellectual property as it applies to prescription drugs and bio-similars. Focus groups, message testing, and case studies are also planned to engage patients and family caregivers on this issue.
This program is funded by grants from:
Biotechnology Industry Organization
Pharmaceutical Research and Manufacturers of America
NHC-NIH Collaborative Research Database
The National Health Council is working with the National Institutes of Health (NIH) to develop a database that would make information on unfunded but worthwhile NIH research proposals available to the NHC’s patient advocacy group members and other potential funders of health research.
Currently, the number of applicants for NIH grants that are deemed significant, and of scientific and technical merit, far exceeds the number that can be funded within the NIH budget. Meanwhile, patient advocacy organizations contribute significant amounts of donor dollars to research as part of their mission to prevent and cure chronic diseases and disabilities. This effort will help these groups make more informed decisions about where and how to invest their research money.
Once launched, the database could speed up the process by which patient advocacy groups fund health research by connecting funding organizations with investigators whose proposals have already been deemed worthy and important.
Considering the millions of dollars of meritorious health research not being funded, this project takes on enormous significance. It has the potential to positively affect the quality of life and longevity of countless individuals and to dramatically improve the health of this nation and the world by funding vital research that can go from bench to bedside.
