To keep moving is to be vital, engaged, and engaging. A panel of four octogenarians agreed that the secret to a sweet good life, to longevity itself, is sharing, community, reciprocity, friendship and a sense of robustness. Being isolated and/or alienated reduces one’s receptivity to engagement and thwarts one’s focus. Not surprisingly, each of the panelists have made diet and exercise a priority.
It may have been more appropriate to say 80 is the new 30 judging from the stamina and recent accomplishments of the panelists.
A typical day in the life of these spirited 80+ clan would be ambitious for most and not for the faint of heart. Continuing to work was a common theme. John Sperling of Apollo Group, a Sierra Club member, is engaged in taking a revolutionary renewable energy product to market and founded a new solar energy company. Jim Pattison of The Jim Pattison Group captured it best when he said, "Retirement is not in the cards." Producer Norman Lear believes in planning for life changes. In his words, he is always "on to next." Deborah Szekely of Rancho La Puerta and Golden Door faces risk head on and believes these are the "vitamins and minerals of life."
Panelists share their commitment to philanthropy, each has a cause to champion and all believe in the power of giving. Lear is a benefactor of People for the American Way, Pattison has always carved out 10 percent of his earnings for his church, Sperling contributes to an array of scientific endeavors and Szekely helps new immigrants.
University of Southern California’s Marty Kaplan who moderated the panel, appropriately ended the discussion when he said, "In my family, in the Jewish tradition, on a birthday, one was wished a life of 120 years, regardless of his/her real chronological age."
View the panel online.
Read the session summary.
Thursday, April 30, 2009
Wednesday, April 29, 2009
A Resounding Call for Innovation
Three days, 3,000 leaders, hundreds of sessions spanning dozens of industries – you can hear a buzz as conversation threads simultaneously happen in the confines of the Beverly Hilton, home of the Milken Institute Global Conference. The meeting catalyzes connections – new and old – that would deliver tangible and intangible value for years to come. The themes are vast and among what resonated throughout is the need for innovation: new ideas, surprising solutions, out-of-the-box approaches. All anxiously await the next big thing.
Health and medical research panels echoed this call for innovation. Here’s a snapshot:
Health and medical research panels echoed this call for innovation. Here’s a snapshot:
In a session focused on the future of health, former NIH director Elias Zerhouni said it takes 20 years to create a smart scientist, the people who will ultimately be responsible for keeping “us ahead of technology and pursue crazy ideas.” Massachusetts Institute of Technology president Susan Hochfield emphasized the need to sustain K-12 funding and strengthen support to put young people in the pipeline. The seeds of research begin in these environments. Eli Lilly’s John Lechleiter focused on the need to develop and sustain an ecosystem for innovation.
View the video
Read the session summary- Nonprofit leaders spoke at a panel on how best to sustain their mission in an economic downturn. Some organizations are taking real innovative approaches to ensure their sustainability. John Walsh from the Alpha-1 Foundation explained how the Foundation has started AlphaNet, a health management company that “is governed by, employs, and serves Alphas”. AlphaNet essentially “recycles insurance dollars” and pushes profits into Alpha-1 disease research.
View the video
Read the session summary
Tuesday, April 28, 2009
Helping Philanthropists Make Informed Investment Decisions
“When you invest your money, you look for the best return on investment. When you donate it, shouldn’t you look for the best return on your philanthropy?” - Greg Simon, President, FasterCures
FasterCures just launched the Philanthropy Advisory Service, an online information marketplace that will provide reliable, independent data on the efficiency and productivity of nonprofit disease research organizations. PAS was created to help philanthropists make informed investment decisions and have in place a mechanism to assess the return on their philanthropy.
After two years of medical literature review, organization interviews, expert consultations, and intense data analysis, we are proud to release information on Alzheimer’s disease and multiple sclerosis and the organizations involved in researching cures for these diseases. We are just getting started, this is the first of a planned series of reports. Expect more reports on malaria and tuberculosis in the summer.
PAS allows philanthropists to do just that. They can direct their philanthropy to organizations whose medical research goals match their own and identify where their money can make a critical difference in finding new cures. It’s available to registered Premier Users, free of charge, for a year. Learn more.
Related links:
FasterCures at the 2009 Milken Institute Global Conference
Each year, FasterCures joins some of the world’s most forward-thinking leaders at the Milken Institute Global Conference. Each year, we strive hard to spotlight issues and trends that impact healthcare and medical research. Each year, we engage, debate, and attempt to forecast what’s next in an ever-evolving industry.
Anxiety about the state of the economy was front and center as we prepared for this year's meeting. After all, by many measures, we are in the middle of a global economic meltdown. However, economic woes quickly took a step back when news about the swine flu outbreak dominated Monday morning headlines. As President Obama said in remarks that day, “if there was ever a day that reminded us of our shared stake in science and research, it's today… our capacity to deal with a public health challenge rests heavily on the work of our scientific and medical communities.”
Indeed, the latest challenge facing the global community is yet another reminder of how critical it is to prioritize health above all else. FasterCures sessions at this year’s Global Conference focus on what we could do to ensure that the scientific and medical communities continue to deliver exceptional results that will extend and improve life. We have convened expert panels to forecast the future of health, explore healthcare reform, examine nonprofit sustainability, and discuss stem cell research developments. And we are active participants in numerous other discussions that impact our work.
Stay tuned: we will blog throughout the week to keep you posted.
Anxiety about the state of the economy was front and center as we prepared for this year's meeting. After all, by many measures, we are in the middle of a global economic meltdown. However, economic woes quickly took a step back when news about the swine flu outbreak dominated Monday morning headlines. As President Obama said in remarks that day, “if there was ever a day that reminded us of our shared stake in science and research, it's today… our capacity to deal with a public health challenge rests heavily on the work of our scientific and medical communities.”
Indeed, the latest challenge facing the global community is yet another reminder of how critical it is to prioritize health above all else. FasterCures sessions at this year’s Global Conference focus on what we could do to ensure that the scientific and medical communities continue to deliver exceptional results that will extend and improve life. We have convened expert panels to forecast the future of health, explore healthcare reform, examine nonprofit sustainability, and discuss stem cell research developments. And we are active participants in numerous other discussions that impact our work.
Stay tuned: we will blog throughout the week to keep you posted.
A Renewed Fight Against Malaria
By Loren Becker, Global Health Program Analyst, FasterCures
The global health community is abuzz with possibilities for malaria – media attention on the disease last week, leading up to World Malaria Day, provided us a glimpse of this interest. Since Bill and Melinda Gates issued their call for the global elimination of malaria in late 2007, the global health sector are fired up about putting an end to a disease that kills a child every 30 seconds and imposes direct costs of $12 billion a year on sub-Saharan Africa. The commemoration of World Malaria Day on April 25 spotlights some of these efforts.
Now a renewed interest in malaria has led to new tools. The global community appears to have learned some lessons: current efforts include initiatives aimed at developing the next generation of tools. With increased research funding we’ve seen the birth of many malaria specific organizations including the Medicines for Malaria Venture and the Malaria Vaccine Initiative, and the Foundation for Innovative New Diagnostics, for which malaria is one of several focal diseases. Older research organizations like the Seattle Biomedical Research Institute and the UNICEF/UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases also have ramped up their investments in malaria research.
Many of these research groups are nonprofit organizations that receive most or all of their funding from governments and foundations. Private philanthropists can play an important role in funding key malaria research that will save lives. To help these donors understand targeted areas for potential of philanthropic R&D investment, the FasterCures Philanthropy Advisory Service is including malaria in the pilot. Look for the launch in June!
Let’s keep the attention on malaria spurred by World Malaria Day throughout the rest of the year. Here’s a glimpse at some of the coverage last week:
The global health community is abuzz with possibilities for malaria – media attention on the disease last week, leading up to World Malaria Day, provided us a glimpse of this interest. Since Bill and Melinda Gates issued their call for the global elimination of malaria in late 2007, the global health sector are fired up about putting an end to a disease that kills a child every 30 seconds and imposes direct costs of $12 billion a year on sub-Saharan Africa. The commemoration of World Malaria Day on April 25 spotlights some of these efforts.
- The Roll Back Malaria Partnership launched a two-year campaign to ensure universal coverage of anti-malarial tools.
- A group of major donors announced a new program aiming to make powerful anti-malarial drugs affordable.
- Even celebrities like David Beckham and Ashton Kutcher have gotten in on the act through campaigns to purchase and distribute insecticide-treated nets to protect from mosquitoes while they sleep.
Now a renewed interest in malaria has led to new tools. The global community appears to have learned some lessons: current efforts include initiatives aimed at developing the next generation of tools. With increased research funding we’ve seen the birth of many malaria specific organizations including the Medicines for Malaria Venture and the Malaria Vaccine Initiative, and the Foundation for Innovative New Diagnostics, for which malaria is one of several focal diseases. Older research organizations like the Seattle Biomedical Research Institute and the UNICEF/UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases also have ramped up their investments in malaria research.
Many of these research groups are nonprofit organizations that receive most or all of their funding from governments and foundations. Private philanthropists can play an important role in funding key malaria research that will save lives. To help these donors understand targeted areas for potential of philanthropic R&D investment, the FasterCures Philanthropy Advisory Service is including malaria in the pilot. Look for the launch in June!
Let’s keep the attention on malaria spurred by World Malaria Day throughout the rest of the year. Here’s a glimpse at some of the coverage last week:
- Financial Times: Special Report: Combating Malaria
- CNN: A to Z of malaria
- CNN: Bioengineered bugs could lead to malaria vaccine
- BBC: 'Double whammy' malaria drug hope
- Washington Post: Immune cell offers new clue to worst malaria cases
Wednesday, April 22, 2009
What Happened to My Medical File?
By Angelo Bouselli, Communications Manager, FasterCures
Images of my mother taking me to the doctor in a small town just outside of Scranton, Pennsylvania as a kid in the 1970s flicker in my mind like an old science fiction movie – the women behind the sliding glass window, the ugly chairs in the waiting room, the bright lights, and playing with Matchbox cars. We would wait to be called, walk through that heavy door with the little window, and down a long hallway lined with endless shelves of paper files. As a kid it was all very foreign to me but I knew those folders were somehow important.
I recently had a full physical with my doctor of 11 years. Until this visit, I hardly paid attention to what my doctor was writing in my file. As with every routine exam, he started asking questions. I knew the answers to some, but others he had to help me figure it out. He opened the folder and leafed through pages that should contain my life’s medical history – but he only had the chapters from the last 11 years. The rest of my story is probably stored in a box somewhere in northeast Pennsylvania.
What will it take for me to have a folder with my entire medical history? And, who should bear the responsibility of managing my record? Should I take it upon myself to keep this folder updated? Should I count on my doctors to keep each other appraised? Should I expect some government agency to bear this responsibility? And if I or some other entity were to go through the process of putting all this information in one place, then shouldn't this information be made available to clinical research as well?
In this day and age, we need a system that houses our complete medical record, the same way my bank managers my financial history. And, this system should be accessible by those we turn to deliver medical care as well as those we count on to develop medical cures. My current paper file is useless to me should I need medical care outside of my doctor’s office. Despite years and millions of dollars invested by government agencies and private IT companies to spur adoption, less than 20 percent of physicians currently use electronic health records. A recent survey from the American Academy of Family Physicians identified start-up cost to be a major barrier for providers to purchase an electronic system.
The Congressional Budget Office estimates that of the $787 billion stimulus package Congress approved in February, more than $20 billion will be spent on health-information technology between 2011 and 2015. A comprehensive health IT system is a giant step to making healthcare more efficient. I hope these stimulus dollars stimulate health providers nationwide to go paperless, save some trees, and most importantly deliver more effective and efficient care.While I’m still interested in finding out where the first 20 plus years of my medical history is, I’m more interested in knowing how the $20 billion will actually stimulate health IT adoption. Will my doctor in Washington get his share of the $20 billion pie? What about my doctor in Pennsylvania? And, what of those working in the labs to develop new medical treatments – do they get to benefit from the health IT movement as well?
For more information on EHRs download a copy of the FasterCures report "Think Research: Using Electronic Health Records to Bridge Patient Care and Research"
Images of my mother taking me to the doctor in a small town just outside of Scranton, Pennsylvania as a kid in the 1970s flicker in my mind like an old science fiction movie – the women behind the sliding glass window, the ugly chairs in the waiting room, the bright lights, and playing with Matchbox cars. We would wait to be called, walk through that heavy door with the little window, and down a long hallway lined with endless shelves of paper files. As a kid it was all very foreign to me but I knew those folders were somehow important.
I recently had a full physical with my doctor of 11 years. Until this visit, I hardly paid attention to what my doctor was writing in my file. As with every routine exam, he started asking questions. I knew the answers to some, but others he had to help me figure it out. He opened the folder and leafed through pages that should contain my life’s medical history – but he only had the chapters from the last 11 years. The rest of my story is probably stored in a box somewhere in northeast Pennsylvania.
What will it take for me to have a folder with my entire medical history? And, who should bear the responsibility of managing my record? Should I take it upon myself to keep this folder updated? Should I count on my doctors to keep each other appraised? Should I expect some government agency to bear this responsibility? And if I or some other entity were to go through the process of putting all this information in one place, then shouldn't this information be made available to clinical research as well?
In this day and age, we need a system that houses our complete medical record, the same way my bank managers my financial history. And, this system should be accessible by those we turn to deliver medical care as well as those we count on to develop medical cures. My current paper file is useless to me should I need medical care outside of my doctor’s office. Despite years and millions of dollars invested by government agencies and private IT companies to spur adoption, less than 20 percent of physicians currently use electronic health records. A recent survey from the American Academy of Family Physicians identified start-up cost to be a major barrier for providers to purchase an electronic system.
The Congressional Budget Office estimates that of the $787 billion stimulus package Congress approved in February, more than $20 billion will be spent on health-information technology between 2011 and 2015. A comprehensive health IT system is a giant step to making healthcare more efficient. I hope these stimulus dollars stimulate health providers nationwide to go paperless, save some trees, and most importantly deliver more effective and efficient care.While I’m still interested in finding out where the first 20 plus years of my medical history is, I’m more interested in knowing how the $20 billion will actually stimulate health IT adoption. Will my doctor in Washington get his share of the $20 billion pie? What about my doctor in Pennsylvania? And, what of those working in the labs to develop new medical treatments – do they get to benefit from the health IT movement as well?
For more information on EHRs download a copy of the FasterCures report "Think Research: Using Electronic Health Records to Bridge Patient Care and Research"
Wednesday, April 15, 2009
Let's Make Cancer Research Happen
By Margaret Anderson, COO, FasterCures
I was going through some clips this week and the Houston Chronicle Op-Ed caught my eye Now's time to reinvigorate country's War on Cancer. U.S. Senators Kennedy and Hutchison outlines in the piece what their bipartisan legislation proposes to do to get things moving. Of the many important proposals detailed in the legislation, the third solution the senators present focuses on a more coordinated approach to cancer research. There was also mention of how "Integrated research will help accelerate the progress of lifesaving research. The search for cures should be a collaborative goal." Indeed!
I was particularly pleased when the senators highlighted the need to establishing an interconnected network of biorepositories with broadly accessible sources of tissue collection and storage. Biospecimens are often cited by the research community as the most critical of all issues. Unfortunately, experts contend that "of the 350 million specimens collected in the United States, only 30 percent of them - some say the number is even lower - are of a quality standard high enough for research purposes." That's why we developed and facilitate BioBank Central. We want to link researchers with resources, encourage the donation of specimens, and educate the public about scientific advancements. I am hopeful that this bipartisan legislation will be instrumental in breaking down this obstacle to research progress.
The senators went on to state in this piece that "our national policy should encourage all stakeholders in the War on Cancer to become allies and work in concert toward cures." It's certainly not that scientists and doctors don't want to be allies, if they could have done anything to save the lives of the half a million Americans who died of cancer in 2008, they surely would have. But there is work to be done to create the necessary networks, and then to maximize their potential.
My father, Don Anderson, was one of the thousands who died prematurely of cancer in 2005, and the research team that led his leukemia clinical trial at Johns Hopkins University did everything they could to find treatments to extend and maybe even save his life. On the day that someone you love dies of cancer, you cannot help but think about all of the other families that are going through that experience at the same time. It is not a comforting thought. The barriers that stood in the way of progress in the research he participated in went well beyond the scientific questions the team faced about how to shut down the mechanism of his cancer, and surely included the barriers this legislation aims to address.
Let's be sure to have a robust discussion about these barriers and potential solutions in the context of the Kennedy-Hutchison cancer bill. There will be an anticipated 1.4 million Americans diagnosed with cancer this year that will get added to the group of people whose lives have been changed forever by cancer. They and their families and friends are all anxious for rapid progress in cancer research and care. Let's make it happen.
I was going through some clips this week and the Houston Chronicle Op-Ed caught my eye Now's time to reinvigorate country's War on Cancer. U.S. Senators Kennedy and Hutchison outlines in the piece what their bipartisan legislation proposes to do to get things moving. Of the many important proposals detailed in the legislation, the third solution the senators present focuses on a more coordinated approach to cancer research. There was also mention of how "Integrated research will help accelerate the progress of lifesaving research. The search for cures should be a collaborative goal." Indeed!
I was particularly pleased when the senators highlighted the need to establishing an interconnected network of biorepositories with broadly accessible sources of tissue collection and storage. Biospecimens are often cited by the research community as the most critical of all issues. Unfortunately, experts contend that "of the 350 million specimens collected in the United States, only 30 percent of them - some say the number is even lower - are of a quality standard high enough for research purposes." That's why we developed and facilitate BioBank Central. We want to link researchers with resources, encourage the donation of specimens, and educate the public about scientific advancements. I am hopeful that this bipartisan legislation will be instrumental in breaking down this obstacle to research progress.
The senators went on to state in this piece that "our national policy should encourage all stakeholders in the War on Cancer to become allies and work in concert toward cures." It's certainly not that scientists and doctors don't want to be allies, if they could have done anything to save the lives of the half a million Americans who died of cancer in 2008, they surely would have. But there is work to be done to create the necessary networks, and then to maximize their potential.
My father, Don Anderson, was one of the thousands who died prematurely of cancer in 2005, and the research team that led his leukemia clinical trial at Johns Hopkins University did everything they could to find treatments to extend and maybe even save his life. On the day that someone you love dies of cancer, you cannot help but think about all of the other families that are going through that experience at the same time. It is not a comforting thought. The barriers that stood in the way of progress in the research he participated in went well beyond the scientific questions the team faced about how to shut down the mechanism of his cancer, and surely included the barriers this legislation aims to address.
Let's be sure to have a robust discussion about these barriers and potential solutions in the context of the Kennedy-Hutchison cancer bill. There will be an anticipated 1.4 million Americans diagnosed with cancer this year that will get added to the group of people whose lives have been changed forever by cancer. They and their families and friends are all anxious for rapid progress in cancer research and care. Let's make it happen.
Tuesday, April 14, 2009
If You Leave Me Now, You’ll Take Away the Biggest Part of Me…
Susan Semeleer, Associate Director of Communications, FasterCures
The unsettled economy is forcing nonprofits – and the donors who sustain them – to make hard decisions about disbursement of funds. The economic downturn has created more need – and diminished the giving capacity of those best able to meet that need.
An Associated Press story last month chronicled the broadside that nonprofits are expected to take as grim economic statistics mount. Couple a weak economy with shifting fiscal priorities, and the potential consequences for nonprofits are huge. Even a small minority of donors scaling back could add up to billions in lost contributions – enough to topple teetering nonprofits. Real dollars. Real consequences.
So how do charities keep their institutional heads above water when everyone is cutting back on expenses? Conversely, how can donors be assured that their contributions are being put to the best possible use? On this space a few weeks ago, my colleague Melissa Stevens drafted a post on the FasterCures Philanthropy Advisory Service. The PAS was created to fill the information vacuum caused by the lack of reliable, independent data on the efficiency and productivity of charities and nonprofits. The PAS truly is a tool for its time: a convenient, easily navigated one-stop clearinghouse of information, gleaned by using a singularly focused set of criteria: how well – and how effectively – an organization is being run and is contributing to the research community, allowing philanthropists and their advisors to make informed decisions about giving.
Americans are a generous people, even in lean times, and charitable giving in the U.S. has been largely impervious to economic downturns. This morning, NPR's Marketplace reported that "donations to charities in the millions have fallen by one-third, and the need for assistance keeps climbing. But some philanthropists use this as a call to give more in times of greatest need." Indeed, giving increased during the Great Depression. And although there have been 11 recessions since the end of World War II, only in one year has total giving actually fallen in the U.S. – 1987, the year of the Black Monday stock market crash. But, as one philanthropy expert told the AP, “This is a Darwinian moment for the nonprofit sector.” When charity becomes a question of survival of the fittest, it can be expected that many charities won’t survive. Enterprises like PAS ensure that the charities and nonprofits that do survive are very likely to be the ones that will do the most good, for the most people.
The unsettled economy is forcing nonprofits – and the donors who sustain them – to make hard decisions about disbursement of funds. The economic downturn has created more need – and diminished the giving capacity of those best able to meet that need.
An Associated Press story last month chronicled the broadside that nonprofits are expected to take as grim economic statistics mount. Couple a weak economy with shifting fiscal priorities, and the potential consequences for nonprofits are huge. Even a small minority of donors scaling back could add up to billions in lost contributions – enough to topple teetering nonprofits. Real dollars. Real consequences.
So how do charities keep their institutional heads above water when everyone is cutting back on expenses? Conversely, how can donors be assured that their contributions are being put to the best possible use? On this space a few weeks ago, my colleague Melissa Stevens drafted a post on the FasterCures Philanthropy Advisory Service. The PAS was created to fill the information vacuum caused by the lack of reliable, independent data on the efficiency and productivity of charities and nonprofits. The PAS truly is a tool for its time: a convenient, easily navigated one-stop clearinghouse of information, gleaned by using a singularly focused set of criteria: how well – and how effectively – an organization is being run and is contributing to the research community, allowing philanthropists and their advisors to make informed decisions about giving.
Americans are a generous people, even in lean times, and charitable giving in the U.S. has been largely impervious to economic downturns. This morning, NPR's Marketplace reported that "donations to charities in the millions have fallen by one-third, and the need for assistance keeps climbing. But some philanthropists use this as a call to give more in times of greatest need." Indeed, giving increased during the Great Depression. And although there have been 11 recessions since the end of World War II, only in one year has total giving actually fallen in the U.S. – 1987, the year of the Black Monday stock market crash. But, as one philanthropy expert told the AP, “This is a Darwinian moment for the nonprofit sector.” When charity becomes a question of survival of the fittest, it can be expected that many charities won’t survive. Enterprises like PAS ensure that the charities and nonprofits that do survive are very likely to be the ones that will do the most good, for the most people.
Thursday, April 9, 2009
Bridging the Valley of Death: Improving the Federal Commitment to Translational Research
FasterCures invites you to a special presentation and discussion
Wednesday, April 22, 9:30 am – 11:00 am
Wednesday, April 22, 9:30 am – 11:00 am
Featuring:
- Amy Comstock Rick, Chief Executive Officer, Parkinson’s Action Network
- Mary Richards, Deputy Chief Executive Officer, Parkinson’s Action Network
- Margaret Anderson, Chief Operating Officer, FasterCures
It is widely acknowledged that one of the factors behind the slow momentum in clinical discovery and application is the ever-widening gap – referred to by some as a “valley of death” – in funding and support for the kind of research that moves basic science down the path toward treatments. Years of discovery, the genome and information revolutions, the doubling of our national investment in research through the NIH, and a new sense of urgency for progress in curing diseases have created a changed research environment that demands a system with greater flexibility, efficiency, and accountability.
In recent years the federal government has acknowledged the need to enhance its commitment to translational research so that Americans will see a better return on the enormous investment of their tax dollars in the form of improved health and cures for disease. What is needed to promote more effective investments in translational research at the federal level? What can the community of research advocates do to support this goal?
Please join FasterCures for this important discussion on:
Wednesday, April 22
9:30 am – 11:00 am
1101 New York Avenue, NW, Suite 620
Washington, DC 20005
Please RSVP to Patricia Wolf at pwolf@fastercures.org or 202-336-8917.
Tuesday, April 7, 2009
Medical Research Needs More Strange Bedfellows
By Cecilia Arradaza, Communications Director, FasterCures
In yesterday's Washington Post, E.J. Dionne makes the case that this year, is "healthcare's year." He claims "this is the year Congress will finally give every American access to health insurance." As "healthcare reform," mainly healthcare coverage, continues to rise to the top of the nation's domestic priorities, the biomedical research industry needs to continue to work fast and furious to ensure that we will actually have available the safe and effective drugs and devices that we've worked so hard to get covered.
The process of bringing drugs to market is laborious, complex, and lengthy. Shareholder-driven entities and public organizations need to take high risks. Advocacy groups need to be armed with the right tools to support and scrutinize. Healthcare consumers need to understand and appreciate what medical research entails and be willing participants in the process, ideally before they become patients. Medical providers need to be able to go beyond the six-minute window they have to "deliver care" and actually provide patients with easy-to-grasp information that will empower them to make right decisions and engage them in the process of finding a cure.
At FasterCures, our efforts focus on finding new medical solutions by seeking ways to disentangle conflicting incentives that permeate the medical research environment, misaligned priorities, and often, misplaced regulation. We share this commitment with numerous like-minded organizations. But we can't continue talking among ourselves. We need diverse voices because disease and disability knows no bounds.
We need effective messengers championing our cause. Athletes and actors have amplified healthcare messages and most of them have done so because they, too, have been struck by the lack or absence of treatment options. We need leaders from other industries to understand the need not just for healthcare coverage but also for medical solutions and become engaged advocates. We need Jesse Dylan and those like him. As profiled in a recent Wall Street Journal article, Dylan gives those of us working to address the many challenges facing medical research - hope. Because he gets it. He gets the complexity of science, the challenges of the research, and more importantly, he gets the need to package this for the shrinking attention span of the YouTube and Twitter generation.
Late last year, Dylan had participated in a FasterCures leadership forum on social and cure entrepreneurship (thanks to ScienceCommon's John Wilbanks for connecting him to us). The forum's discussion bounced back and forth between the need for more information and the centrality of patients and the transformative nature of empowering them to play a greater role in research. And throughout the day, he aptly reminded us that efforts to fix our broken healthcare and health cure systems must include simple, short, and sensible messages.
We need more un-scientists experimenting with science.
P.S. Coming Soon: FasterCures' report "From Social Entrepreneurship to Cure Entrepreneurship" -- watch this space!
In yesterday's Washington Post, E.J. Dionne makes the case that this year, is "healthcare's year." He claims "this is the year Congress will finally give every American access to health insurance." As "healthcare reform," mainly healthcare coverage, continues to rise to the top of the nation's domestic priorities, the biomedical research industry needs to continue to work fast and furious to ensure that we will actually have available the safe and effective drugs and devices that we've worked so hard to get covered.
The process of bringing drugs to market is laborious, complex, and lengthy. Shareholder-driven entities and public organizations need to take high risks. Advocacy groups need to be armed with the right tools to support and scrutinize. Healthcare consumers need to understand and appreciate what medical research entails and be willing participants in the process, ideally before they become patients. Medical providers need to be able to go beyond the six-minute window they have to "deliver care" and actually provide patients with easy-to-grasp information that will empower them to make right decisions and engage them in the process of finding a cure.
At FasterCures, our efforts focus on finding new medical solutions by seeking ways to disentangle conflicting incentives that permeate the medical research environment, misaligned priorities, and often, misplaced regulation. We share this commitment with numerous like-minded organizations. But we can't continue talking among ourselves. We need diverse voices because disease and disability knows no bounds.
We need effective messengers championing our cause. Athletes and actors have amplified healthcare messages and most of them have done so because they, too, have been struck by the lack or absence of treatment options. We need leaders from other industries to understand the need not just for healthcare coverage but also for medical solutions and become engaged advocates. We need Jesse Dylan and those like him. As profiled in a recent Wall Street Journal article, Dylan gives those of us working to address the many challenges facing medical research - hope. Because he gets it. He gets the complexity of science, the challenges of the research, and more importantly, he gets the need to package this for the shrinking attention span of the YouTube and Twitter generation.
Late last year, Dylan had participated in a FasterCures leadership forum on social and cure entrepreneurship (thanks to ScienceCommon's John Wilbanks for connecting him to us). The forum's discussion bounced back and forth between the need for more information and the centrality of patients and the transformative nature of empowering them to play a greater role in research. And throughout the day, he aptly reminded us that efforts to fix our broken healthcare and health cure systems must include simple, short, and sensible messages.
We need more un-scientists experimenting with science.
P.S. Coming Soon: FasterCures' report "From Social Entrepreneurship to Cure Entrepreneurship" -- watch this space!
Wednesday, April 1, 2009
Protecting Patients, Protecting Privacy?
Susan Semeleer, Associate Director of Communications, FasterCures
I consider myself a pretty savvy patient. Since being diagnosed in my teens with a rare heart condition, I have seen at least a dozen specialists, undergone still more tests and procedures, and openly provided my most sensitive information to medical personnel. I remember when I first started getting with every procedure goldenrod yellow authorization forms on which my caregivers pledged to guard the privacy of my health information. My first reaction was, “What had you been doing with it?”
Last week, I attended my first FasterCures briefing – a discussion of a new Institute of Medicine report entitled Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health through Research. In 1996, Congress enacted the Health Insurance Portability and Accountability Act, which called for a set of federal standards for protecting the privacy of all personally identifiable health information. The statute attempted to walk a regulatory tightrope: preserving a patient’s reasonable expectation of privacy, while maintaining the free-flow of information necessary for high-quality health care.
The FasterCures panel was the second in a new series of discussions on issues of importance to facilitating medical research. The fact is, though we at FasterCures have been hearing HIPAA bemoaned as an impediment to research since we launched in 2003, the IOM study is the first attempt to gauge its full impact.
Biomedical researchers use health information culled from sources like patient registries, medical records, biobanks and government-supported statistics databases; the HIPAA Privacy Rule was enacted to ensure that patient privacy was not compromised by the compilation of these data. But, according to the findings of the IOM report, HIPAA has compromised both patient privacy and medical discovery, and needs to be revamped if it is to serve the interests of patients as well as researchers.
Panelist Marc Boutin is Vice President of Policy, Development and Advocacy for the National Health Council, and a member of the IOM committee. He says that on the question of medical privacy, a vast difference exists between public perception and legal reality; the average patient assumes a level of protection under the Privacy Rule that simply doesn’t exist, and entities covered under the Rule inconsistently interpret the definition of “privacy.” IOM calls for a revamping of HIPAA, which would include an entirely new framework for health research that would enhance protection of medical data through improved security, transparency and accountability – not just a one-size-fits-all provision that, in reality, fits no one.
What it seems HIPAA has managed to do is create a labyrinthine tangle of regulations, codes and procedures that have thrown roadblocks on the path to medical discovery. The heaviest unintended consequences of HIPAA are felt in research that is abandoned, and opportunities that are lost. In its efforts to protect privacy, HIPAA has hamstrung basic components of medical research, increased research costs, and rendered useless a lot of biomedical data that could help cure disease. What’s more, according to an IOM-commissioned survey, only 13 percent of respondents said they did not want their medical data used “under any circumstances.” What IOM calls for is a mechanism that respects the wishes of those patients, while making it possible to gain safe, transparent access to the potentially-critical medical data of patients who are willing to share it. The key here is accountability, and sensible, practical distinctions between interventional research, and research that is exclusively information-based.
I want my privacy protected. I don’t want my family, my friends, the government, my employer, or my nosy next door neighbor to have the ability to troll my medical data. That said, I came to work for FasterCures for a reason: to dedicate my professional life to finding cures for diseases that kill and cripple. If my medical information is shared on a “need to know” basis – and if that hurdle is sufficiently high – then I have absolutely zero objection to clinicians and researchers seeing my blood work or echocardiograms. Have at it. Find a cure. Save a life.
I consider myself a pretty savvy patient. Since being diagnosed in my teens with a rare heart condition, I have seen at least a dozen specialists, undergone still more tests and procedures, and openly provided my most sensitive information to medical personnel. I remember when I first started getting with every procedure goldenrod yellow authorization forms on which my caregivers pledged to guard the privacy of my health information. My first reaction was, “What had you been doing with it?”
Last week, I attended my first FasterCures briefing – a discussion of a new Institute of Medicine report entitled Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health through Research. In 1996, Congress enacted the Health Insurance Portability and Accountability Act, which called for a set of federal standards for protecting the privacy of all personally identifiable health information. The statute attempted to walk a regulatory tightrope: preserving a patient’s reasonable expectation of privacy, while maintaining the free-flow of information necessary for high-quality health care.
The FasterCures panel was the second in a new series of discussions on issues of importance to facilitating medical research. The fact is, though we at FasterCures have been hearing HIPAA bemoaned as an impediment to research since we launched in 2003, the IOM study is the first attempt to gauge its full impact.
Biomedical researchers use health information culled from sources like patient registries, medical records, biobanks and government-supported statistics databases; the HIPAA Privacy Rule was enacted to ensure that patient privacy was not compromised by the compilation of these data. But, according to the findings of the IOM report, HIPAA has compromised both patient privacy and medical discovery, and needs to be revamped if it is to serve the interests of patients as well as researchers.
Panelist Marc Boutin is Vice President of Policy, Development and Advocacy for the National Health Council, and a member of the IOM committee. He says that on the question of medical privacy, a vast difference exists between public perception and legal reality; the average patient assumes a level of protection under the Privacy Rule that simply doesn’t exist, and entities covered under the Rule inconsistently interpret the definition of “privacy.” IOM calls for a revamping of HIPAA, which would include an entirely new framework for health research that would enhance protection of medical data through improved security, transparency and accountability – not just a one-size-fits-all provision that, in reality, fits no one.
What it seems HIPAA has managed to do is create a labyrinthine tangle of regulations, codes and procedures that have thrown roadblocks on the path to medical discovery. The heaviest unintended consequences of HIPAA are felt in research that is abandoned, and opportunities that are lost. In its efforts to protect privacy, HIPAA has hamstrung basic components of medical research, increased research costs, and rendered useless a lot of biomedical data that could help cure disease. What’s more, according to an IOM-commissioned survey, only 13 percent of respondents said they did not want their medical data used “under any circumstances.” What IOM calls for is a mechanism that respects the wishes of those patients, while making it possible to gain safe, transparent access to the potentially-critical medical data of patients who are willing to share it. The key here is accountability, and sensible, practical distinctions between interventional research, and research that is exclusively information-based.
I want my privacy protected. I don’t want my family, my friends, the government, my employer, or my nosy next door neighbor to have the ability to troll my medical data. That said, I came to work for FasterCures for a reason: to dedicate my professional life to finding cures for diseases that kill and cripple. If my medical information is shared on a “need to know” basis – and if that hurdle is sufficiently high – then I have absolutely zero objection to clinicians and researchers seeing my blood work or echocardiograms. Have at it. Find a cure. Save a life.
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