Personalized Healthcare Needs to Get Personal

by Greg Simon, President, FasterCures

A personalized approach to healthcare starts with patients being involved in medical research. We are all walking medical record repositories for ourselves and our loved ones. And yet, patients are still the healthcare system’s largest untapped resource.

Embedded within each patient is the information – medical records, biological material such as tissue, blood, and DNA, and our biology as observed in clinical trials – that is crucial to understanding and managing disease. The ability to effectively preempt, accurately diagnose, and successfully treat disease relies on a patient’s willingness to provide personal genetic and medical information and to become an involved participant throughout the medical research continuum.

Each of us has experienced how patients are not at the center of healthcare. It's no surprise why patients are not chomping at the bit to participate in research – information about clinical trials is scarce and confusing, there are few incentives in exchange for your effort and time, and healthcare providers rarely provide you with the guidance and the care you need and deserve to navigate through a complex process.

Everything has to change to put patients at the center. To make personalized medicine a reality for all, we need to transform our current healthcure and healthcare systems from the outdated model of the last century to an integrated, information-based, high-quality, health-sustaining model. We need a healthcure system that engages patients from the very beginning of the research process instead of turning to patients as an afterthought. We need a healthcare system that will improve treatment options for patients, prevent the onset of disease in the first place, and improve the quality of life for generations to come.

When it comes to your health -- take it personally.

For more information, download a copy of the just released FasterCures white paper "Patients' and Consumers' Interests and Perspectives in Personalized
Healthcare." This paper looks into the cutting-edge
possibilities of personalized healthcare and the need for patient involvement
and provides a glimpse into how "personal" personalized healthcare is and what
consumers think about the advent of this era. FasterCures was
commissioned to develop this paper by the Office of the Assistant Secretary for
Planning and Evaluation at the U.S. Department of Health and Human Services, as
part of Secretary Michael O. Leavitt’s Initiative on Personalized Health
Care.

Related Blogs:
11.18.08
Science Progress Blog:
The Revolution Will Be Personalized
A Cautious HHS Report on the Latest Buzz In Medicine

Long Live Mr. Health's Legacy

by Greg Simon, President, FasterCures


"By your deeds you shall be known."

That is why Paul Rogers – so well known from a lifetime of good deeds – will be missed by millions of people. I say millions because if you or a loved one has ever been sick or poor or hungry, Paul Rogers did a good deed for you. With a stentorian voice that seemed made in heaven, Paul Rogers advocated for this nation to make protecting the health and well-being of all of us a national imperative. The organization he loved and that loved him – Research! America – is the fountain from which sprang so many organizations (including FasterCures) trying to improve the health and quality of life of all people. His work through Research!America to double the NIH budget will lead to cures and therapies that will affect millions. The Paul G. Rogers Society for Global Health Research Ambassadors program funded by the Gates Foundation to promote awareness of global health issues will affect hundreds of millions.

We all could learn a thing or two from Congressman Rogers' 24-year tenure. He kept his eye on the nation's top priorities and made it his own. He helped ensure that generations of Americans have access to the best that medical science has to offer -- life-saving cancer therapies, medical devices, emergency medical care, public health programs -- and made sure that the water we drink is clean and safe and the air we breathe is free of pollutants.

Congressman Rogers saw the potential for improving our nation's healthcare system and worked tirelessly to turn that potential into tangible benefit for millions of Americans. He helped rally Congress to wage a war on cancer, supported increased investment in the National Institutes of Health, worked to maintain the integrity of the Medicare and Medicaid programs. More significantly, he paved the way for the biomedical research enterprise to become the most scientifically and technologically advanced system in the world.

The FasterCures team extends our sincere condolences to the family of the late Congressman Rogers and to Research!America for the loss of this great and caring man. There are few absolutes in life, but here’s one: Paul Rogers devoted his life to helping others and never asked a thing for himself. The greatest gift we can give his family and friends is to try and do that ourselves everyday.

Greg Simon named one of 10 Most Influential in Biomedical Policy

This month's Nature Medicine named Greg Simon, FasterCures President, one of the ten most influential people to watch in biomedical policy. The article presented "a handful of influential people who quietly help keep the wheels of biomedical science turning."

According to the article --

...influence can take many forms. When it comes to biomedical science policy in the US, the names of some people with clout are obvious. But beyond the Nobel laureates and university presidents there is another set of people who wield power. Some of these influential players, such as patient advocates or experts who churn out reports for think tanks, are well known within their own communities. Others, such as Senate staffers or policy makers at the US National Institutes of Health (NIH), operate under the radar.

Not enough Alzheimer’s patients?!

by Jeongyeon Shim, Program Analyst, FasterCures

As part of the FasterCures’ Philanthropy Advisory Service program, we invited four eminent scientists in Alzheimer’s disease research to learn more about their perspectives on key opportunities and challenges that the field is facing. We discussed many of the exciting development occurring in the field. In addition to progress in basic research, many potential treatments are showing promise in animal studies and various stages of clinical trials. Many of the efforts targeting what scientists believe to be the causes of the disease are moving along the pipeline, and novel mechanisms of interventions are also discovered.

The meeting also addressed challenges in AD research. Among others, low enrollment in clinical trials was highlighted as a key challenge in transforming exciting scientific discoveries into treatments that benefit the patients. Alzheimer’s is not exactly an orphan disease—it impacts 4.5 million patients in the US today, with a drastic increase of disease burden expected. How is it possible that there are not enough clinical trial participants?

Many clinical trials in Alzheimer’s target the patients in early stage of the disease, since that is when the debilitating effects of dementia, caused by the death of neurons, can be averted. However, a diagnosis is less straightforward at early stage, given that clear biomarkers of the disease are yet to be established. Even in cases where diagnosis is made early, additional challenges to clinical trial participation exist. For example, under the current system of care where primary care physicians are in charge of most Alzheimer’s patients, it is difficult to have patients enroll in clinical trials, which are conducted in more specialized healthcare centers. Trial participation may also increase the burden to the caregiver due to the need for additional visits, especially when the trial site is at a distant location.

While scientists and trial administrators focus on finding solutions to this challenge by developing biomarkers for early diagnosis, reaching out to primary care physicians, educating participants on the importance of trials and developing technological solution to reduce the need for physical visits, the most important lever would be that patients and caregivers learn more about trial options, and when possible, enroll in trials. Participating in trials requires substantial effort from the patients and caregivers as well as courage to commit to a therapeutic regimen that is yet to be proved. No other research tool can substitute for clinical trials in developing novel therapeutics. Trial participants make an invaluable contribution to medicine by making themselves available—we cannot overemphasize the fact that none of the medical breakthroughs we have today would have been realized without their contribution.

To highlight one trial, the Alzheimer’s Disease Cooperative Study, a clinical trial network funded by the NIH, is currently recruiting participants for a trial aiming to curb the toxic effects of beta-amyloid .* This is not the only trial targeting Alzheimer’s disease—ClinicalTrials.gov lists 121 trials in the US and 216 when counted across the globe, actively recruiting participants, as of September 24, 2008. FasterCures has been highlighting clinical trial participation as a key element to accelerate medical research. I look forward to a day when an informed conversation about clinical trial participation becomes part of routine medical care.

*FasterCures does not endorse any specific clinical trial. Decisions on clinical trial participation should be made based on consultation with healthcare professionals.

Calling All Ideators, Gearheads, and Entrepreneurs

by Kristin Schneeman, Program Director, FasterCures

As many of you who follow what we do at FasterCures know, we’ve been interested for a while in the approach to innovation taken by InnoCentive, a Web site on which "seekers" can post problems to be tackled by a universe of "solvers," many of them from entirely different disciplines. Born out of a need to open up innovation within the pharmaceutical industry, the site is now beginning to be used by groups like the "Prize for Life" challenge to find a biomarker for ALS, and the Global Alliance for TB Drug Development.

FasterCures and the folks at InnoCentive are now embarking on an experiment together by posting an Ideation Challenge on the site, one of the company’s first "Public Policy and Citizens in Action" challenges seeking solutions to important issues facing society. We’re hoping to benefit from the "wisdom of the crowd" by asking for novel approaches and/or incentives that might induce companies to invest more in biomarkers research and qualification.

Within a day of posting the challenge we were pleasantly surprised to see that there were dozens of "project rooms" opened by individuals interested in possibly submitting a solution; by the end of the week there were more than a hundred. The proof will be in the pudding, of course. This sort of challenge is quite different from the ones that have become InnoCentive’s bread and butter (with apologies for mixing my food metaphors).

InnoCentive’s successes can be attention-grabbing. One example is a challenge posted by the Ocean Spill Recovery Institute to solve a thorny problem that has long hampered cleanup efforts from the Exxon Valdez oil spill, among others: the difficulty of separating frozen oil from water in collection barges. A chemist from the concrete industry proposed an approach based on a technique that has been used for years to move liquid concrete; he won $20,000, and the oil industry solved a decades-old problem within two months after posting it on the Web.

Nonprofits are beginning to use InnoCentive with success to help solve problems of poverty and disease in the developing world, as well. A Rockefeller Foundation-sponsored challenge produced a design for a compact milling machine that would allow rural farmers in India to increase their income to as much as $30 a day. The solver is a self-described "ideator, gearhead, and entrepreneur" – probably not someone in Rockefeller’s network of usual suspects.

Our challenge is a good deal less concrete than these, but no less important or in need of innovative thinking. We’re eager to see what kinds of responses we get back after the November 15th deadline. We could have tapped likely academics or consultants to write us a paper on overcoming the challenges of biomarker research and qualification. But for now we say, bring on the ideators, the gearheads, and the entrepreneurs!