It's Time to Turn to Research's Most Valuable, Yet Underutilized Resource: Patients

By Margaret Anderson, COO, FasterCures
A piece in yesterday's New York Times, Research Trove: Patients' Online Data, recounts the story of a young woman stricken by a rare pulmonary disease, and her attempts to raise money and connect a network of scientists to research her ailment. In collaboration with a Harvard cancer researcher, she launched a Web site for others facing her same diagnosis, on which patients could share symptoms and report health information.

This kind of observational research, that focuses on empirical and experiential input, could prove invaluable in the quest to gain better understanding of disease and how it corrupts the functions of the human body. But there is more. Just as importantly, this story reinforces the contribution patients can make to their own medical care. In the search for cures, there is no substitute for patient engagement. For biomedical research to be effective and successful, it is imperative that it be patient driven. Empowering patients to play an active role in medical research requires transparent communication from trusted sources (i.e., frontline healthcare providers), a mechanism to ensure the patient's voice is heard loud and clear by decision and policy makers, the means for effective two-way communication between researchers and patients in real time, and informing the public about the value of clinical research to increase awareness and spur involvement.

FasterCures remains committed to supporting healthcare access but also in the creation of a “health cure” system that puts patients first.

FasterCures Statement on the Passing of Senator Kennedy

FasterCures joins the nation, and the world, in mourning the passing of Senator Ted Kennedy. He lived his life in service of the American people, fearlessly protecting and improving the way we live. His leadership in health, education, and labor has shaped our nation and his legacy will live on.

His relentless commitment to improving the well-being and health care for all Americans will continue to guide and inspire our work and that of the health advocacy community for generations to come. The roar of the Senate's lion will endure, his dream shall never die.

Our deepest condolonces go to his family, friends, and the nation.

PAS Offers Philanthropists Impartial Analysis of Select Medical Nonprofits

by Margaret Anderson, COO, FasterCures

The FasterCures Philanthropy Advisory Service (PAS) last week unveiled information on select Alzheimer’s disease and multiple sclerosis organizations, the first in a series of completed reports focused on efficacy and efficiency of research organizations. In its pilot phase, PAS features the latest medical research developments and objective analysis of key nonprofit disease research organizations in Alzheimer’s disease, malaria, multiple sclerosis, and tuberculosis.

PAS begins with the premise that when you invest your money, you look for the best return on investment. FasterCures created PAS to help philanthropists make informed investment decisions and have in place a mechanism to assess the return on their philanthropy.

Philanthropic investment in medical research, though small in size, plays a unique, critical role in finding medical solutions. I think of it as a small, but mighty piece of the pie. Philanthropic money fills funding gaps in research that is high-risk but also with potential of high-return. For some diseases, nonprofit funding models are virtually the only source of capital for innovative, risk-taking research. And yet, there is lack of independent, reliable data about disease research.

Launched as part of an effort to fill the information vacuum, PAS is a transparent and impartial resource for the medical research philanthropy community. PAS data and analysis are based on a focused set of criteria: how well – and how effectively – a nonprofit research organization is being run and how it is contributing to the advancement of research. Criteria include:

• Milestones
• Advisory boards
• Knowledge production
• Industry partnerships
• Tools and resources

The PAS pilot phase is available to all registered Premier Users. Those directly involved in medical research philanthropy are invited to become Premier Users and have free access for a full year to PAS resources.

Now available: An archive of the 8/13 web briefing featuring the following speakers and a live PAS demo:

• Lucy Bernholz, Founder & President, Blueprint Research and Design, Inc.; Member, PAS Organizational Review Board
  

  "Philanthropy Advisory Service is bringing about the careful, meticulous,
  well-informed research about diseases, disease research, disease research
  organizations, and bringing that to light in a way that can inform a wide
  variety and ultimately a large number of philanthropic assets so that the goal
  of advancing disease research can be achieved."

• John Q. Trojanowski, M.D., Ph.D., University of Pennsylvania, Co-Director, Center for Neurodegenerative Disease Research; Director, Institute on Aging; and Director, Alzheimer's Disease Core Center; Member, PAS Alzheimer’s Disease Scientific Advisory Board
  

  "I know of no other organization that brings this kind of expertise to bear on
  advising donors about how their investments in research are being used... The advisory service for Alzheimer’s, which is what I’ve specifically been involved with, has been detailed, accurate, substantive, clear, concise. I clearly see this as an important service that foundations can avail to determine whether they are hitting their target in their mission."

• Rusty Bromley, COO, Myelin Repair Foundation
  

  "We saw PAS as an opportunity [for nonprofit research organizaitons] to provide more transparency and help differentiate organizations within the same space based on their mission. Having an outside organization applying uniform criteria to measure operational effectiveness has tremendous value and something we can look at to determine how we're performing against our own internal standards."

• Tim Armour, President and CEO, Cure Alzheimer's Fund
  

  "PAS helps philanthropists and others to understand the niche that an
  organization serves, and then adds additional value of helping to evaluate how well the organization serves that niche... I think PAS does two things [for CAF]. One, we can learn about good practices from other organizations, in virtually real time - which is very valuable, particularly to a young organization like ours. Two, we can identify other organizations with whom we can partner with on specific issues. We can do that with a lot of other homework, person-to-person, but this gives us a very good first-cut."

Visit http://www.philanthropyadvisoryservice.org/ for more information.

FasterCures Joins Council for American Medical Innovation

Council for American Medical Innovation Welcomes Newest Partners, The AIDS Institute and FasterCures
WASHINGTON, D.C. – The Council for American Medical Innovation is pleased to announce its new partnership with The AIDS Institute, one of the country's foremost champions for HIV/AIDS research and education, and FasterCures, a non-profit organization that accelerates the development of scientific research into new medical cures and treatments. Margaret Anderson, Chief Operating Officer of FasterCures has also joined the Council's advisory board.

"The AIDS Institute and FasterCures have tirelessly championed medical innovation by building public and political support for the research and funding necessary to develop new medical treatments and technologies," said Debra Lappin, president of the Council for American Medical Innovation. "Their efforts underscore the Council's mission to call on Congress to adopt public policies that spur medical innovation and put cures within patients' reach."

Beginning as a grassroots advocacy effort in the late 1980s, The AIDS Institute has expanded to become a leading national public policy research, advocacy and education agency. The AIDS Institute has offices in Washington, DC and Tampa, FL at the Division of Infectious Diseases and International Medicine at the University of South Florida, College of Medicine. The AIDS Institute is focused on HIV/AIDS work and incorporates work on related health care issues such as Hepatitis, as well as other infectious and chronic diseases.
FasterCures is a non-profit "action tank" formed under the auspices of the Milken Institute with a mission to identify and implement global solutions to accelerate the process of discovery and clinical development of new therapies for the treatment of deadly and debilitating diseases.

The new partners join seventeen other organizations in the Council for American Medical Innovation, including: AdvaMed, ALS Association, American Society for Radiation Oncology, American Academy for Child and Adolescent Psychiatry, American Academy of Nursing, Association of American Universities, Association of Clinical Research Organizations, Cleveland Clinic, College of Physicians of Philadelphia, Leukemia & Lymphoma Society, National Health Council, National Organization for Rare Disorders, National Venture Capital Association, Parkinson's Action Network, Pharmaceutical Research & Manufacturers of America (PhRMA), RetireSafe, and Whitman-Walker Clinic.

About the Council for American Medical Innovation
The United States faces serious challenges to maintaining its leadership position in innovation. The Council for American Medical Innovation is bringing together leaders in research, medicine, public health, academia, education, labor, and business, who are working in partnership toward a national policy agenda aimed at preserving U.S. leadership in medical innovation. American medical innovators create millions of high-paying jobs, and their discoveries are integral in the fight to cure cancer and other illnesses. The Council for American Medical Innovation views leadership in medical innovation as a key part of America's economic recovery, future prosperity and health.

Register Now: Partnering for Cures, Dec 1-3, New York

Every day, thousands of people are diagnosed with deadly and debilitating diseases for which there are no cures...And yet, it takes 15 years to develop new medical solutions.

Join those on the front lines in the fight against disease in a first-of-its-kind meeting - Partnering for Cures - convened by FasterCures, the Washington, DC-based center of the Milken Institute. The meeting will bring together three separate and distinct pieces of the cure puzzle: research organizations with innovative medical approaches, biopharmaceutical companies that develop cures, and philanthropists who fund the search.

FasterCures is organizing Partnering for Cures with the goal of forging strategic cross-sector collaborations that will:

• empower philanthropists to make informed investment decisions and measure the impact and return on their philanthropy;
• enable medical research foundations to find the right partners and investors needed to discover and commercialize new therapies; and
• facilitate biopharmaceutical industry partnerships that could yield cutting-edge medical solutions.

Register now to participate in this timely and crucial effort. Make one-on-one connections, share information, and meet potential collaborators through a customized partnering system designed to accelerate the pace of life-saving drug research and development.
Space is limited, please register early. Significant discounts apply for early registration, special rates available for nonprofit medical research and patient advocacy groups. For more information: www.partneringforcures.org

FasterCures in today's NY Times: Why Patients Turn Down Clinical Trials

Why Patients Turn Down Clinical Trials

To the Editor:

Re “Lack of Study Volunteers Is Said to Hobble Fight Against Cancer” (“Forty Years’ War” series, front page, Aug. 3):

I read with interest your article about the chilling effect that low recruitment for clinical trials has had on the search for meaningful treatments.

Patients can play a critical role in the search for cures, but it is time we rethink the entire paradigm surrounding clinical trial design and recruitment.

Clinical trials offer patients some say in their own destinies, and to leave a legacy that may save others, even if it’s too late to save themselves.

Unfortunately, the current system governing clinical trials gives patients concrete reasons to balk at participating. Often, clinical trials are aptly named: they are trials — difficult and exhausting, at a time when a patient’s physical and emotional capacities are already stretched thin.

Within each of us is a Rosetta Stone that could unlock the potential to cure disease, but it requires that we reconsider how we approach treating a seriously ill patient — and how we approach being one.

Margaret Anderson

Washington, Aug. 4, 2009
The writer is chief operating officer of FasterCures, which aims to accelerate the pace of medical research and development.

http://www.nytimes.com/2009/08/07/opinion/l07cancer.html?_r=1&ref=opinion