Imagine your next visit to the doctor’s. After reviewing your health history and your VA electronic medical record, she says: “Your blood pressure medicine isn’t working quite as well as I would like, but I know what will work for you!”
How can she be so certain?
The answer could lie in a new VA Research initiative that will help clinicians personalize medical treatment. Called the Million Veteran Program, the initiative is being launched today on a national scale as part of VA Research Week. Through the anticipated participation of as many as one million Veteran volunteers, MVP will help researchers better understand the effects that genes have on health and illness, with the ultimate objective of improving Veterans’ health care. By collecting, analyzing, and comparing a rich mix of Veteran patient data—genetic profile, health history, lifestyle–MVP will help customize health care in a way that was once unimaginable, bringing us closer to personalized medicine for Veterans, and ultimately, all Americans.
It must be emphasized that MVP is first and foremost a partnership between Veterans and VA. As Dr. Joel Kupersmith noted earlier this week in VAntage Point, it is an example of the many types of research collaborations we celebrate as part of Research Week.
Over the next five to seven years, Veterans who choose to participate in MVP will help to create the world’s largest research database of genetic, military exposure, and health information. This database, built on a foundation of protecting Veteran privacy, will be used for studies that lead to new ways of preventing and treating illnesses in Veterans and all Americans. As part of this research partnership, Veterans are being asked to provide a blood sample, from which their DNA will be extracted; complete a health information survey; and allow access to their medical record. Using the data collected, researchers will be able to study how genetic variations, environmental factors, and military service are associated with illness and health.
VA has been conducting genomic research for a number of years, and genetic tests are already used clinically, for example, to determine if Veterans who have blood clots in the legs are predisposed to developing them again, and to help diagnose and treat colon and breast cancers and other diseases. Importantly, MVP will provide a foundation upon which VA investigators can design and conduct future studies that use genetic, environmental, and military service information to help prevent disease and improve medical care.
Three factors are key and cannot be overemphasized. First, participation in MVP is entirely voluntary. Further, a decision to participate, or not participate, will not in any way affect Veterans’ access to health care or benefits.
Second, as I mentioned earlier, data security is a top priority. Samples collected from Veterans for MVP will be labeled with a code instead of their name, address, date of birth or social security number. Researchers who are allowed to analyze these samples will not have access to this type of personal information.
Third, this research will be carried out in a culturally sensitive manner that respects ALL Veterans and their ethnic and cultural identity.
MVP is being rolled out in phases and will ultimately be open to participation by all Veterans receiving care in the VA health care system. Today there are more than 20 sites, with more coming online each month.
In addition to his role as Deputy CRADO, Dr. O’Leary, is Director, Office of Clinical Science Research and Development (CSR&D. His clinical and research expertise is in the use of molecular genetics for diagnosis and treatment of disease.
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My Concern. What are they really going to do with the DNA samples, give it to some European company to do experiments with, or perhaps some Israeli experimental group which leads the DNA Experimentation fields partnered with several US and Foreign organizations? They claim to be wanting to help future VA participants, when they make you fight for what little care you do get, IE I fell into the water when we were in Honduras and ingested a crap load of water, oops reverse that literary, water loaded with crap and began to have all kinds of problems with my stomach, and even after having it in my medical records I still cant get it as service connected compensation even with the ongoing stomach problems I deal with in silence. Same with my teeth, I went into service with excellent teeth, arrived at my first duty station, saw the dentist, she said my teeth were the best formed teeth she had ever seen and in excellent condition. Once assigned to my Unit’s dentist he checked my teeth and said I had an impacted wisdom tooth which he extracted. After that I started having cavities every 6 months and they were in sets of teeth. I get out, think I can get help with my teeth, think again, I’m not 100% service connected. I’m however service connected 70%, and if what they say is true and all diseases are genetic, then anything that goes wrong with us while in service is in response to a genetic factor, then it no longer is the responsibility of the U.S Government to care for or give care to someone who was predisposed to existing conditions based on genetic factors. I am very Patriotic this is due to genetic factors as well, being I’m an 10th Generation American, well 1st 3 generations were British or under British rule, of my fathers lineage, so being, I will participate in the program but I seriously doubt it’s going to help any of us. Although, I am confident it will help some large CORPORATION make billions of dollars, as they will not have to field and fund the studies, they will have unlimited access to our DNA, health records and results of the studies. Exactly like Digital TV, all paid for and funded by the Taxpayers but which is distributed by the dish and cable companies who give you a box to set next your TV or sets up a an inexpensive made dish, who receive all the revenue. which all they really should have been allowed to do was sell you a dish, sell you a receiver, and some sort of maintenance contract.
I think that this study is important. However, I believe it should be taking a back burner to projects and processes within the VA Healthcare Centers overall. I have been to several with my Father throughout my lifetime. All in New England and every one of them incompetent and unethical. My Father has Asbestosis from being a Boilerman in the Navy for several years and being exposed to and working directly with Asbestos daily with absolutely no protection. Now because his pension is “Non-Service Related Disability” due to a Motor Vehicle Accident 1 year after honorable discharge they will not even treat or diagnose this problem. His advocate has admitted to his lack of accurate and needed diagnosis, and has very bluntly told me they do not want to have to pay back pension for a service related disability which his illness would be classified, from the time it started. His symptoms began in 1997 so that would be a significant amount of money. They pay him a meager living allowance which equals out to about 200% of Poverty level, and have informed him he can have no other sources of income. This administration not only WILL NOT care for my father, but has also doomed him to live a life of Poverty for the last 40 years and however many more he has. I know there won’t be too many because he can barely breathe now and they refuse to treat him for what is actually wrong.
As much as I think personalized healthcare is a good move, maybe they should get adequate Healthcare in itself correct and functional first.
How nice of you to not address the concerns written above. You can do study after study but it is how you treat vets and how competent the VA medical staff IS NOT that shows what the VA is all about.
I know this from my own episode of Va care at the Atlanta VAMC. What a joke the medical staff is there. And worse than that, how disrespectful to the veterans who they seem to think have no idea just how bad/grossly imncompetent they really are. As a medical professional myself, I knew how they compromised tests with their own version of what they wanted to do: for example how can a “72 Hour Fasting blood test” be done in 48 hours? The name of the test is “72” hrs but they tried to say it could be done in 48?? Give me a break. When this kind of thing is pointed out, they act like you are “crazy” for questioning them. I will never trust the VA again; I had doubts in the past but just one hospitalization and now I KNOW the truth.
My suggestion is for the medical director of a VA to hide his identity and check into a VA, covertly, and then see for him/herself just how a vet is treated. They do this on TV w/ business/ bosses, and CEO’s of big companies. I challenge the VA to try this. What an eye opener it will be !!!
I have noticed some of the negative comments about this study. I am not able to speak to the issue of privacy and record hacking. What I can speak to is the importance of personalized medicine and the type of information that can be gathered from such a study. The future of ALL medicine is personalized medicine. Currently, there are fewer than two dozen personalized medicines or diagnostics. By enrolling in this initiative, participants will be furthering, and assisting in the development of the medicines of the future. Not just for you, but for your children, and their children. I applaud the VA for this bold initiative that will further the cause of personalized medicine. If you would like to read an article written by a friend of mine of this subject, please click this link:http://www.forbes.com/forbes/2011/0228/technology-adriana-jenkins-cancer-herceptin-dying-wish.html
I’m encouraged that several of you have taken the time to read my blog and to raise some thoughtful questions. Let me try to address some of the issues raised about facilities, participation, and data security and privacy.
First, with regard to participating facilities, nine VA medical centers (VAMCs) are currently enrolling (Boston, West Haven, Durham, Manhattan, Gainesville, Buffalo, Palo Alto, Cleveland and Seattle), and 18 VAMCs are in the process of launching the program (in other words, investigators and clinicians at these sites have been trained, and Veterans will soon be able to enroll in MVP at these locations). By the Fall of this year, we expect a total of 35 VA medical centers to be actively participating. To monitor which sites are coming online when, please check back at http://www.research.va.gov/mvp/ (scroll down a bit, and you’ll see information regarding participating sites on the right hand side).
Second, with regard to participation in the program—and why a Veteran must already be receiving his or her medical care within the VA health care system— the answer is that researcher scientists need to be able to follow a Veteran’s health history over many years. The complex interaction among genes, environment, lifestyle, and other factors evolve and change over time. In order for MVP to generate meaningful results—that is, findings that will improve health care for Veterans—researchers need to study these relationships, and the way to do so is through longitudinal history.
In fact, what makes MVP unique from other large database efforts studying genomic information is the same factor that sets VA health care apart from other health care providers: VA’s electronic medical record system. The VA electronic medical record system contains information from the first day that a Veteran receives health care from VA.
Finally, with regard to data security and privacy. All patients, whether or not they are Veterans, are understandably concerned about these issues. Let me briefly note the several security and confidentiality mechanisms we have established for MVP.
o Veteran’s samples are stored in a secure state-of-art biorepository with restricted access.
o Veteran’s data are stored behind the VA firewall in a secure database called the Genomic Information System for Integrated Science (GenISIS).
o Veterans’ samples and data will be labeled only with a code, instead of name, address, date of birth or social security number. Only few authorized VA staff will have access to the link to the code.
o Researchers approved to analyze samples and data will not have access to the name, address, date of birth or social security number of participating Veterans.
o Researchers will analyze data within the scientific computing environment of GenISIS, behind the VA firewall, instead of sending data out to the researchers.
We know that there are many thousands of Veterans across the United States who are suffering from the physical and mental consequences of war. The MVP is a resource that will enable VA researchers to better understand the diseases that afflict these Veterans so that we can develop better treatments for today’s heroes and to prevent these diseases in those brave men and women who will protect America’s freedom in the future. There are no words adequate to thank those who volunteer to participate in this, and other research efforts, for the precious gift they are once again giving both to those who have served, and those they have protected.
That’s it, huh? Step 1: Collect data Step 2: solve problems. I guess this guy hasnn’t been working for the VA for too long!
He forgot the part where all the data is lost, veterans are billed for participating, and then the VA scraps the program halfway through. Why not just make it part of MyHealtheVet (oops, is it called something else this week?)
Notice the lack of responses from the VA on the concerns posted here.
Being that I am a veteran who is service connected disabled and have been fighting tooth and nail to get what is even considered adequate health care from the VAMC. This despite two bouts of stomach cancer with all the wonderful side effects from the surgeries, chemotherapy, radiation treatments such as daily nausea , malnutrition, severe osteoporosis, cachexia, chronic daily pain, anemia, hypoglycemia. Throw in teeth that are literally rotting out of my head as the acid has eroded the enamel completely away and I have the joy of spitting out portions of my teeth, which also contributes to my weight with clothes being around 150lbs with my 6’4” frame. I just recently received the additional wonderful news from a resident Pulmonologist at the James Lovell Federal Healthcare Center that said and I quote “ You are one of the lucky ones! Despite the fact that I feel that you did have an asbestos exposure in service, you demonstrate no signs of any asbestos related lung disease from this asbestos exposure.” This was absolutely wonderful news one might think, but for the fact that this same doctor based his medical opinion on reviewing one CAT scan that was conducted at the VAMC in 2006 while he compared this with a CAT scan that was conducted only two months later and proclaimed Halleluiah! But wait a minute this is now 2011 and five years since these CAT scans were conducted, not to mention that I have had countless CAT exams conducted since then to which three other doctors have since reviewed and diagnosed me with the early stages of Asbestosis which is another fatal disease. You see this top-notch VA doctor despite already having forwarded countless CAT scans to the VA, as well as hand carrying in these same exams and his refusing to even look at them. You see any doctor worth his weight in salt or reputation would gladly and preferably review current and up to date reports and exams, yet this VA doctor chose to formulate his professional medical opinion on the last CAT scan that was conducted by the VAMC as this was the very last one that the VA will ever be allowed to conducted on me by the VA, ever. You see this was also the last CAT scan that my assigned VA Oncologist after initially reading and reviewing this report said “Everything looks great! You are going to beat this cancer, see me in six months for blood work!” It was this same CAT scan that two VA Radiologists advised over and over again on this report that further tests and investigations needed to be conducted as it appears that this patient has metastasized cancer in his lungs, stomach and liver. So it was only two months later when a civilian hospital conducted a CAT scan and viewed the same results and their physicians actually did their job, that they said that I needed to go back to the VA Oncologist as they did complete what their Radiologists had suggested and had found out that my cancer had reoccurred. Now when approached and having this original CAT scan thrown in his face this VAMC Oncologist would not even discuss his negligence as he stated “This is part of the past and let’s move forward from here.” To which he now said having actually read the report as well as the new test results from the civilian community medical centers “I am sorry but you have stage IV cancer, I want to give you intensive chemotherapy and give you pain medications until you pass away. I promise that I will make sure that you are not in any pain until you pass.” Why am I telling you and your readers all of this? It is quite simple, I can only speak about my experiences and that of other veterans that I have encountered at my local VAMC that being the James Lovell Federal Healthcare Center, is that if I had listened to this incompetent Oncologist that I would be dead today, that is a fact. To diagnose without conducting actual biopsy’s to prove the return or spread of cancer is not practicing medicine but practicing barbarism, yet the VAMC employs Oncologists and doctors such as this. So based on this experience should I now take the word of the resident Pulmonologist? Of course not! When I have three other doctors who have diagnosed me with Asbestosis from exposure while in the service, yet this arrogant Pulmonologist who conducts an examination, and a C&P examination I might add, all in hopes of following the VA’s number one motto as to deny, deny and deny even further, and in doing so this Pulmonologist did not put his patients health first and foremost. But rather his career and that of those that employ him first. As such as I asked this same VA doctor if he had a child who was ill would he want the doctors to examine and base a diagnosis on tests conducted within the last month, or tests that had been conducted five years ago? To which this doctor would not and refused to respond! I said is it not even a remote possibility that CAT scans that have been conducted since 2006 might demonstrate all the symptoms of Asbestosis as my civilian doctors have read these and formulated their opinions based on these? Again this same VAMC Pulmonologist would not respond! I went further on to say is it not the policy to compare and contrast CAT scans over the course of a long period of time to properly diagnose Asbestosis as this is what I was informed as well as everywhere I have read that this is an acceptable way to diagnose Asbestosis? To which this VAMC Pulmonologist again refused to answer. Finally I said and asked are you an American Board of Radiology Certified as a “B” Reader (These are medical doctors that are trained and certified to interpret CAT scans and other radiological evidence to make a formal diagnosis of Asbestosis), to which again I was greeted with silence as if I was an idiot! I use to think that perhaps it was just myself receiving misdiagnosis’s, receiving other patients medications, being called the most overmedicated patient that a civilian doctor has ever treated in all his years of practice and that the continuity of care that had been given to me at the VAMC was a medical disgrace, and one and on. But yet all one has to do is talk to other veterans, open your mouth and speak to them at this VAMC and take the time to really listen and it is a nightmare, in fact it is a disgrace to every American that has ever wore a uniform. Yet when you discuss issues to improve the quality of care with the Patient Advocates they offer you $5 calling cards and “I am sorry” for you and other veterans having to wait three hours past your scheduled appointments. Or they try and stroke your ego and promise to investigate and call you or your wife back immediately regarding a problem, to which they hope you will just go away and do not call you back until you have to track them down again and have to relay your entire issue all over again since you obviously were such a priority in their job in the first place. Or when you have an appointment with your VA primary care physician and he says that “you need to remind him about referrals to other physicians and departments” that he wants you to be seen by??!! Yet months and years go by and these referrals’ go apparently into the primary care doctors computer but never come out as is my case countless times over and over again and again. If you are a veterans or a family member of a veteran that has hung in there to read this far let this be a warning to you! If you have one single health issue that does not require continual chronic care I have heard that this facility is wonderful, but if your health needs require continual treatment and care with many different health issues seek help outside the VA Healthcare Center, it may save your life, it did mine! So as far as monitoring me and having any trust whatsoever in the VA Healthcare Center here, well you can count me out as well as everyone that I personally know who goes to my local VAMC, you do so at your own peril, be warned! I truly believe that these VAMC employee’s feel that the VA is lucky to have them rather than the reality is that they all are replaceable and that these employee’s are lucky to be able to be employed by the VA. Time after time the sheer attitude of VA employee’s is that we the veterans are lucky to be treated by these personnel, rather than these VA employee’s forgetting that it is a privilege to work at the VA and they are there to meet the needs of the veterans, period. To me this is a culture or negative attitude that is demonstrated daily at least at the VAMC that I go to. As I also have Social Security and am disabled and will never be able to work again because of the effects of the cancer, I utilize Medicare even though it is cheaper financially for my wife and I to use the VA only. Things such as the above mentioned VA Oncologist who said that he was going to have a referral rushed through for a PET scan to be conducted in June of 2006 when my cancer had returned, yet the VA called back in November of 2006 and said that they had finally scheduled me to have a PET scan in Milwaukee, WI at the VAMC there. However, I already had had a PET scan as well as surgery and everything else required and was at home recovering by then, yet this was a rush request??!! If you were diagnosed with a reoccurrence of cancer and your doctor said that he would rush this referral through and it took four months or more, not one of you would find this acceptable, nor would any of you tolerate this. Still these are the practices that have happened at this particular VAMC, but they want myself and other veterans to stay silent, to offer a million excuses as to why these things happen? The real nice trick that the Patient Advocates use at the James Lovell Federal Healthcare Center is that my wife and I tried to speak with the Hospital Administrator, to set an appointment to discuss our care and treatment there, well good luck with that one as his/her secretary won’t allow this. All attempts were and have been blocked. This individual who via tax dollars works for you and I has insolated themselves so that they do not want to meet face to face, to explain to you as a patient how and why things go terribly wrong, to be held accountable. When a veteran was seeking to speak with a mental health counselor concerning grief after loosing a loved one and instead was told by a mental health nurse that “These things happen in life. Sometimes in life we just need to get down on our knees and pray and then get back up and suck it up, and get on with our lives!” This advise and subsequent denial to be referred to talk to a mental health doctor by a nurse specifically trained in mental health, this was her counseling to this veteran dealing with depression. I witnessed this veteran crying our for help firsthand and this was his treatment, suck it up and get on with your life! Although I am not a medical professional, I doubt that this is the VA’s standard mental health care protocol? Yet these people retain their jobs, no accountability, arrogant as ever, do not listen to the veterans as they have “heard it all” and life goes on. As I recently read there is an average of 18 suicides from veterans just today, as well as there will be the same number tomorrow and the following day and on and on. How many of these veterans were told or are going to be told to “Suck it up” and get on with their lives?! Think about that when you take a loved one to the VAMC to be treated. I complained about one specific doctor at the VA and received a call back from his nurse and was informed that I needed to find another doctor. This doctor who my wife and I had questioned in person to his face didn’t even have the gonads to even discuss this with us, just pass the buck and get rid of the patient. This stems from having medical professionals in our family who said that we should have been and should question this specific doctor about his methodology and diagnostic protocol to which this doctor stated that he was the “one with the medical degree and the license to practice medicine” and as my wife and I informed this doctor that since this was concerning my healthcare and physical condition that we had every right to question and understand his diagnosis and his course of treatment option(s). Still despite all the rights posted on the patients bill of rights all over the hospital this doctor was not going to be questioned! Like I said it is a culture and an attitude that we have never encountered ever at any civilian medical facility and yet it goes on and on at the VAMC. So if you feel that Personalized Medicine despite what Dr. O’Leary says is going to offer you and other veterans with secure data that respects cultural and ethic identity, I say based on what the past has offered and shown with the VA then good luck to you and yours. If treatment, care, privacy and security based on the past are indicators of the current or future VA Healthcare system then again I would say be warned! This is the same place that can’t even ensure that they have sanitized and safe dental equipment at some locations for as long as twenty years? Or that conduct endoscopic or colonoscopy exams that are not contaminated with pathogens from the previous patient that was examined right before you, or weeks and years before you for that matter in some locations. Yet the VA says trust us? Well that bridge was burned generations ago as our Vietnam veterans can attest! Or the class action suites because someone left a laptop computer laying around so that names, social security numbers and other personal information can be stolen? Yet the VA says trust us?! Veterans should trust you because you are one of countless individuals that are employed at the VA that says trust us? Yet the VA’s track record speaks for itself. Be warned veterans, guard your blood, DNA and all other things that are uniquely yours. Be warned!
I have read and understand the concern demonstrated in the comments above. It is very difficult for many of us to trust the VA–or the federal government in general. We were “fed” the information the government wanted us to know, and served in whatever capacity we were told. Often, our service was denied or disputed by the next political group in control. But the VA has gotten a special place of infamy, especially in the aftermath of the Viet Nam war.
The climate is a great deal different today in MOST VA hospitals. I have worked with/around veterans for the past decade, from several different facilities in different states. The VA has led the way with the technology to provide the best information possible to doctors–regarding treatment options and patient medical history. I applaud this effort and support the continuation of this trend. I believe that MOST VA facilities are excellent, and served with caring and well-trained staff.
But I know that SOME are NOT excellent facilities–and the climate seems to be only provide the veteran what he/she demands. The facilities need to be improved; but, more than that, the ATTITUDE must change. The VA was established and currently exists to assist veterans. That MISSION should be at the beginning of every discussion and every consideration.
I am a veteran with a disability. I would gladly volunteer to participate in the VA study if it helps anyone. But I don’t use the VA medical facilities because I have other health care that meets my needs.
So, even though the Navy has been hacked, and records accessed/copied, the VA has had their records hacked/accessed/copied, and the DoD is under constant probing thru websites in other parts of the world, ..we’re supposed to believe that you can maintain some database “security”. Please excuse while I snicker.
You also state that this “program” will be eventually open to all vets in the VA system. So you specifically DON’t want samples from those of us who have medical problems from incidents that occurred while in uniform, but chose to not go to the VA until we’re ready to die?
I WOULD LIKE TO KNOW WHICH VA FACITITL THIS RESEARCH IS BEING CONDUCTED?