Draft language of letter from Lung Cancer Alliance, Friends of Cancer Research and partner organizations to congressional leaders, June 15, 2009:

June 15, 2009

The Honorable ________

Committee on _________

United States Senate / House of Representatives

Washington, D.C. 21510-6300

Dear Senator/Congressman:

Thank you for your tireless efforts to improve the health of the American public, especially during this time when reform to our health care system is so desperately needed.  Your proposals, specifically the idea of expanding comparative effectiveness research will undoubtedly help improve the information that health care providers and patients use when making medical decisions.

In order to ensure that a comprehensive comparative effectiveness program is sustainable and continuously improved upon over time, a coordinated effort is needed.  A substantial commitment in the American Recovery and Reinvestment Act of 2009 (ARRA) as well as several health reform proposals is creating a once in a lifetime opportunity to revolutionize our health care system. 

Therefore, in this context, we respectfully ask that you consider that the attached language be included as a part of your legislation. It would develop a Secretarial-level public-private partnership to develop standards and the ability to link health data repositories to capitalize on the many sources of health data that are currently isolated from one another. 

Such a system could utilize clinical trial data across multiple diseases and observational health data to enable policy makers, researchers and clinicians to develop insights into optimal diagnosis and treatment protocols (outcomes analysis) as well as enable effective comparative effectiveness research.  Linking data and analyses from public and private entities would create a robust infrastructure to help identify gaps in evidence and generate better hypotheses for future research.

A national health data system will not replace the necessary scientific rigor of randomized clinical trials, but will provide vital information and insights to enable positive changes to be based on data-driven retrospective and prospective analyses.  A coordinated effort to routinely collect, aggregate, and analyze health information will greatly improve accuracy and efficiency of the health care system. 

We are deeply appreciative of your leadership in transforming the United States healthcare system to improve the lives of millions of Americans and look forward to working with you. 

Sincerely,

Alliance for Aging Research 

American Association for Cancer Research 

Association of American Cancer Institutes 

Autism Society of America 

American Society of Clinical Oncology 

C3: Colorectal Cancer Coalition 

Friends of Cancer Research 

Intercultural Cancer Caucus (ICCC)  

Lance Armstrong Foundation 

Leukemia & Lymphoma Society 

Lung Cancer Alliance 

Men’s Health Network 

National Coalition for Cancer Research (NCCR)  

National Comprehensive Cancer Network 

National Lung Cancer Partnership 

National Patient Advocate Foundation 

Ovarian Cancer National Alliance 

Prevent Cancer Foundation 

Society for Women's Health Research 

Susan G. Komen for the Cure Advocacy Alliance