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Genomic Medicine Institute: Bringing genomics to community patients

April 13, 2009 on 3:40 am | In Genetic Testing, healthcare, Genetic Future | Comments Off

In recent years, more and more genetic tests and therapies have become available for patients, physicians and the interested individual. But how does one know which tests to take or are appropriate for one’s condition? And what do we do after we have the test results on our hands? Can our physician help us?

This March, the Genomic Medicine Institute was launched at El Camino Hospital in Monterey, California in response to the emerging opportunities and challenges that the genomic era has introduced. El Camino partnered with DNA Direct to become the first community hospital to integrate genomic medical services into its routine healthcare and provide El Camino physicians and their patients with access to leading edge genomic-based technologies.

I had the pleasure of talking with ECH Vice President and GMI sponsor Jon Friedenberg about this partnership with DNA Direct. In gist, GMI will provide El Camino physicians with the clinical support that they need to make decisions about which of these technologies to incorporate into their practice and which not to. Just as importantly, the institute will provide, their patients, through DNA Direct, with access to state-of-the-art genetic counseling so that they can make informed decisions.

Grace: DNA Direct is not a genetic testing company. Where will patients have their tests done?

Jon Friedenberg: Neither the Genomic Medicine Institute nor DNA Direct are going to provide the testing. That’s done by a third party. What we’re doing is providing clinical support tools for physicians and patients so that they can decide which of these genomic-based tests and therapies are the most appropriate for them. We also give them information on where and how to access the tests. For example, for patients, we provide pre and posttest counseling. As I say, if they would like information, or need information, okay, gee I’ve decided to have this test, how do I do that, where do I go, we would provide them with all of that support that they need so that they can access those tests as they wish. We work with both the physician and the patient to help them interpret the results and formulate a course of action to follow based on all the information, including the results from the test.

Read the complete interview after the cut.

Grace: There are thousands of genetic tests available now. How many tests are currently available to your physicians?

Jon: As you suggested, there are about 2,000 genetic tests that are currently available. Most of them are not tests that would be considered appropriate for patients and doctors in a community hospital setting. So, we are focusing on those that have the clearest clinical benefit to our patients and that’s really our focus. We started on the 26^th with just nine and each quarter we’re going to add more so that so that by the end of the calendar year, we anticipate having approximately 50 tests that are supported by our clinical support and genetic counseling program. .

Grace: Can you give me an example of tests that are at least available at this point?

Jon: Sure. The BRCA1 and BRCA2 testing for breast cancer patients is one, the Oncotype DX test is another. The tests are not all cancer related. They cross multiple subspecialties and of course, as we add more and more tests, that will become even more true.

Grace: So physicians have the opportunity to recommend tests to their patients, but patients also can come to their doctor about a certain information or test that they heard about somewhere?

Jon: Right. Well, what we’re hoping is that our support service will help to inform both patients and physicians and will facilitate greater communication between the patient and the physician regarding these genetic tests. It’s true that there are a lot of patients out there that will read something online, or in the paper or see in on television and they’ll say, “Gee, I want that.” I think that for most genetic tests, if not all genetic tests, but certainly most genetic tests, it’s wise to make sure that you have, as a patient, considered everything that you ought to consider before ordering these genetic tests. By providing access to state of the art genetic counseling and the support to your physician, we’re hoping that will facilitate communication between physician and patient.

I will say that I know that there are sometimes patients who access these tests directly without consulting with their physician. They get their results, they go to their physician and say, “Okay, now what do I do?” We’ll provide support to our physicians and their patients when they’re in that situation, as well, but what we’re hoping to do is avoid that situation by providing the patients with access to the genetic counseling before they decide to take a test. As the question correctly suggests, there are many tests that not every patient is a good candidate for. There is pretest counseling that can help people to determine whether or not this is something they really should do.

Grace: Knowing one’s risk for anything is just part of the equation, at least that’s my opinion. It’s really managing it and having someone guide you into what to do next. That’s basically what this would be more about, not just the genetic testing.

Jon: Right. We’re not cheerleaders. We’re not jumping around telling everybody they should get genetic tests. What we’re recognizing is that genetic testing and genomic-based therapies are here and they’re here to stay. In many cases, they can be extremely powerful and important tools for physicians and patients. Powerful tools that can improve patient outcomes. What we want to do is facilitate the responsible adoption of those tests and those therapies that are appropriate for our physicians and our patients. We’re a nonprofit organization and we are providing this counseling to our community separate and apart from the revenue model that exists for the testing services themselves. We don’t get a piece of the action. We don’t get a kickback and I say that just to make clear that the counseling service and the testing entities are completely separate.

Grace: Okay, that’s really good to know. Are there going to be genetic counselors in the consultations?

Jon: We have, through our relationship with DNA Direct, genetic counselors who will be available to provide, and these are all board certified genetic counselors, they will provide direct and specific genetic counseling to the patients of our physicians.

Grace: Would the support extend to the patient’s family or other relatives who may have the same risk factors or be affected with the same condition as the patient?

Jon: Yes there is. That’s built into the equation. As with inherited diseases, there is a need to at least consider communicating your test results or your pretest decision process to family members. There is support within the Genomic Medicine Institute for reaching out to family members and also providing family members with genetic counseling, as well.

Grace: What’s your initial response from your physicians and their patients?

Jon: The response has been very, very positive. We only just did launch it on March 26, so we’ve had some patient response, but I think it’s very, very early in the process. The physicians we’ve been talking to for a while about this and there’s very significant positive response and they feel that this will enable them to bring this technology to their practice and to their patients sooner than they otherwise could. They’re excited about that opportunity.

Grace: Will this be open to physicians in the greater Silicon Valley area do you have to be a physician or patient in your hospital?

Jon: No. This is a service we’re providing to our physicians and their patients. If there are people who are not a patient of one of our physicians, and they want to access the service, then they can become a patient of one of our physicians and access the service that way. It’s not practical for us to provide this kind of service to the entire universe, as much as there might be a need for someone to provide this service to the universe. We are limiting it to our physicians and their patients.

Grace: Well, I think more hospitals need to have this in place too.

Jon: Well, they say that imitation is the sincerest form of flattery. If other hospitals step up and do something comparable, then we’ll consider ourselves flattered and that would be great. We’re doing it because we think it’s the right thing to do for our patients. We’re excited about it.

Grace: I’m excited about this too, thank you very much, Jon. It’s been a pleasure talking with you.

Jon: Great.

Genetics Interview #26: Dr. Emily DeVoto of The Antidote

November 30, 2006 on 8:35 pm | In Genetics Interviews, diseases, dna, genes, genetics, health, interviews, emily devoto, health care, healthcare, the antidote | Comments Off

Dr. Emily Devoto doesn’t mince words and that’s what makes The Antidote: Counterspin for Health Care and Health News such compelling reading. Opinionated people are my favorite! That is, unless she’s targeting genetics, of course.

1. On your About Me section, you write that you’re “exploring ways to promote, via the Internet, the use of evidence to improve health care and health journalism.” Can you give us some specifics on how you’re doing that?

Obviously the strategies for reaching health care and health journalism audiences are quite different, but in fact there is a common thread, which is the use of best-quality clinical evidence. I’m developing a textbook for health journalists to promote critical evaluation of health research, and I plan to have a hands-on, internet-based component to foster deep learning: fun exercises - games, even - that engage the brain so that you forget that you’re studying.

Why health journalists? It’s not just because all of us cranky scientists get annoyed when we read errors in health news. It’s because health reporters are in the odd - and scary - position of translating research findings for the public, and they’re not just, for the most part, passing along news, they’re producing, in effect, consumer health information, and even at times making recommendations. Because so many people get their health information from the media - even doctors - that puts a huge potential responsibility for public health on the shoulders of health reporters. I also support the efforts of the online Health News Review to evaluate news that’s out there and help reporters learn from constructive feedback; it’s been very well received by journalists, and I talked about it in my blog.

Health care providers and policymakers can benefit from learning the same material, but obviously it needs to be packaged differently for them. In addition, when it comes to improving the quality of health care, the field can benefit greatly from interdisciplinary interactions. I’d like to think that the blogosphere has the potential to facilitate such networking.

2. What motivated you to start blogging? How has your experience been so far? Who’s your target audience? Do you worry about how it might impinge/affect your professional life?

To answer your last question first, I was a little anxious at first about blogging publicly, but I’m convinced that to the extent that I do it well, and professionally, it can only benefit my career. In fact, that’s why I started blogging: to build a portfolio; to get myself thinking, keeping up with news, and writing on a regular basis; to create the foundations of larger writing projects; and to make connections with people around the world who appreciate the power of the Internet. People like you, Hsien!

I assume my target audience will be varied. I’m networking with health policy folks, health journalists, and researchers, but I hope my material is accessible to the educated general public as well. Public health and health care operate at so many levels; they’re not just for MDs and nurses anymore. Interdisciplinary approaches are key.

Other than the challenge of keeping up and posting regularly, the most daunting aspect of blogging hit me early on: the statistic that there now 50 million blogs out there. I can get a little obsessed with my Technorati ratings, and frantic when they don’t update my posts.

3. Most of the scientists and academicians I know don’t spend much time online advancing health policy. Do you think it’s important to encourage them to change their mindset? How would you suggest they incorporate the Web into their work?

Great question. I see the Internet as a way for scientists to network and at the same time avoid going to conferences with the same people year after year. In my experience the quality of research presented at conferences has deteriorated, falling victim to the salami-slicing phenomenon. I’m not suggesting that academicians rely on non-peer-reviewed mechanisms of Web publishing to promote their research. Instead, and forgive me for hammering again on interdisciplinary work, I’d like to see more academicians dipping their toes into other fields. Of course it doesn’t help that the language of so many scientific fields is impenetrable - ever try reading a whole issue of Science Magazine? The social networking part is the next challenge - maybe what we need is MySpace for scientists, minus the bad html, of course. No, really, I’m completely serious.

4. I first learned of you and The Antidote when I read your post about the disparities in funding between healthcare and genetics research. In what ways do you think healthcare research is lacking and how would you suggest going about attracting the big moolah?

Funding health care research can be difficult because delivery systems - where we really need research to focus - usually span multiple disease areas, and standard NIH funding mechanisms consist of single-disease buckets. The U.S. Agency for Healthcare Research and Quality, the main entity responsible for funding health care research, as you’d imagine, is amazingly resourceful with its amazingly tiny budget, which is actually dwarfed by NIH’s spending on health care. For some reason it’s been very difficult to get the public and Congress to see what is so compelling about understanding health care delivery, and more particularly to prioritize the research. We are, as a country, overwhelmed by health care cost, accessibility, and quality issues, but we may think that political solutions will solve them. I don’t entirely disagree, but throwing money at the health care system and/or introducing a single-payer health system will not solve the problems overnight.

I think what we need to promote is the understanding that health care research, health services research, call it what you will, needs to be underlaid by a basic science foundation, which boils down to the understanding interaction between systems and individual behavior (by providers and patients). The basic science thus consists of behavioral sciences, systems science, economics, and study design methodology in interaction with the laboratory and clinical research that NIH is used to funding. If NIH can be convinced that this does in fact represent legitimate basic science research, with a high likelihood of success, then perhaps substantial money can be earmarked for it on an ongoing basis. Multiplying AHRQ’s budget by about 10-fold would help, too.

5. On your very first post, someone left a comment applauding you for “exposing the silliness of health and health reporting.” I think the comment itself is rather silly. But in general, what areas of health reporting do you find particularly frivolous? (Please don’t say genetics. Just kidding.)

Let me say first that I understand that health reporters face all manner of editorial barriers that impede their getting to the full story. Health reporting on local TV news is particularly problematic; it tends to have impossibly short time slots in which to get across a few sound bites, and unfortunately those sound bites, whether in the form of press releases or video, come pre-digested from PR firms, often with some touching personal anecdote. There’s usually no opportunity for the reporter to ask questions like, “Has this (acne treatment, weight-loss pill, screening test) been evaluated in high-quality randomized clinical studies?,” “Are there risks as well as benefits?” or “Is it licensed by the FDA?” If it’s about new research, more often than not it’s about a single study, without the larger context of the research - this is a problem across health media. And what always gets my goat is the little caveat that you sometimes hear: “To find out more about xx, ask your doctor.” “Your doctor” may not have access to any better information than you do, and will probably feel pressured to prescribe it because you’ve been exposed to what’s in effect an infomercial in the guise of journalism. I hope that’s not too harsh.

Thank you, Emily! FYI, The Antidote will be hosting Grand Rounds next Tuesday, submit your posts to Emily by December 3rd.

diseases, dna, emily devoto, genes, genetics, health, health care, healthcare, interviews, the antidote