In 1984, 6 medical professionals came together to serve as medical advisors to our fledgling association. Our Medical Advisory Board now has nineteen esteemed medical professionals that work closely with our staff to support the educational needs of our members as well as help guide our research vision. As part of our interview series in commemoration of our 30th anniversary, Ashly Westrick, Research Manager, sits down with Dr. Michael Williams, Medical Advisory Board member and co-chair of our recent national conference, “Getting to the Heart of Hydrocephalus”.
HA: How did you find HA and come to be a member of the Medical Advisory Board (MAB)?
WILLIAMS: I basically invited myself into the Association. In 1998, HA had a meeting in northern Virginia. This was in the era before widespread use of the internet or cell phones. I had received a brochure or seen a notice of the conference in a journal and wrote to Emily Fudge to introduce myself and ask if they needed a speaker on the topic of normal pressure hydrocephalus (NPH). Emily wrote me a very nice letter, advising that they already had someone to speak on that topic. But I took a couple days off and attended the conference. That is how I first became introduced to HA. I spoke for the first time at the very next conference, which was held in Phoenix. Since then, I think I have been involved with almost every conference in one way or another. I became a member of the Medical Advisory Board in 1999.
HA: What do you see as your role as a member of the Medical Advisory Board, and what would you like your role to be in the future?
WILLIAMS: I think for a long time, HA used the MAB to help in responding to complicated and sometimes unusual questions that came into the toll-free number. More recently, we have taken on a role of advising more about the scientific agenda and the strategic planning for the Association. I think that is one of the reasons why we developed a set of research priorities and have seen more funding of research. Some of the priorities have come through internal workshops and discussions that have involved the MAB with the HA Board, and some have come from external workshops with which the HA has been involved, specifically, the three NIH workshops that have occurred since 2005.
I believe that advising is a better role for the MAB, i.e., to be able to guide the Association at the broadest and most effective level possible regarding models that influence the care of our patients and how we should marshal our resources in research, teaching, or other forms of advocacy. This kind of advice and leadership would contribute in a different way and in addition to the support that MAB members provide at the biannual HA meeting, where we make ourselves available to the members for teaching and question/answer sessions.
HA: What impact do you feel the HA has made in the medical community?
WILLIAMS: I think the biggest influence has been promotion of the idea that we need research in the field of hydrocephalus. And not just research on the next make or model of shunt, but research that will lead to a much better understanding of what happens to the brain with hydrocephalus and how, as a result of that understanding, we can help the brain to heal or recover or to be resistant to injury. I think that in the last 8 to 10 years, reaching out and engaging the NIH and engaging philanthropy to help us create the relationships that are necessary to promote research, to create the networks of people who are coming together through the HCRN, and to engage the broader scientific community has made a big difference. We did not have the ability to do that when I first came to the HA. I think that we sometimes feel as if we are having only a modest impact, but it is far greater than we realize. We always like to see more, but there is no question that we have made a big difference. The biggest challenge is the length of time between identifying a great research idea, getting the research funded and the work accomplished, and translating the results to clinical care. That is why we have worked with the HCRN to help accelerate research.
HA: What impact do you feel HA has made in the patient advocacy community?
WILLIAMS: I think for the community of patients and families, HA has always been a good resource and can continue to be a good resource. How we provide that help to them is changing and will continue to change as technology and the way people like to acquire their information change. Social networking and the Internet have allowed other groups with similar interests to emerge, which is good for our community, but I think that HA has a well-established and well-deserved national reputation and track record, and I would like us to continue to work hard to maintain HA as a well-respected advocacy group for patients and families. We have had some significant impact in Congress, to the extent that it can be measured, but probably the more important influence is within scientific and research circles within the federal government and, in particular, the NIH.
HA: Where would you like to see HA in the next five years?
WILLIAMS: First, I think that HA can continue to serve as a forum for educating patients and families in their healthcare needs, but I would like to see HA engage patients and families more regarding their role in clinical research and the potential long-term benefits of participating in research. I have addressed this topic at two or three HA meetings. Research to improve the care of patients with hydrocephalus cannot happen without research that involves patients with hydrocephalus. As a community of patients, families, and scientists, we must look to each other to be able to move research forward once it is funded. That means that we need to take the strength we are building with the clinical research network and advocate to patients and families for their participation in that research. We know that the more patients who are in registries, the more patients who are involved in clinical trials, the more quickly we can understand whether an idea works to be able to move the state of clinical care forward. Research does not simply spring out of nothingness. Research involves an important working relationship between the clinician–scientist, patients, and families. We want people with hydrocephalus to think not only about themselves, but also about the people who are coming behind them, those who are just coming into the world of hydrocephalus or those who don’t even yet know that they will be affected by hydrocephalus. I know it is an altruistic appeal, but it is also a pragmatic appeal. No patients in research means no research, which means no progress.
I think that this would be a very new direction for HA. We have always told our members about the latest research and have always promoted research, but I think that most people tend to think that conducting research only involves scientists. However, engaging everyone in the hydrocephalus community in research is essential. What does that mean? Some patient advocacy groups do this very well, such as the cancer groups and the cystic fibrosis group. Our challenge is that, unlike cystic fibrosis or other so-called orphan disorders, hydrocephalus has many different faces. It can be a primary disorder, or it can be a secondary disorder. It is not always the same thing, even though it has a unifying concept of big ventricles that need to be treated with a shunt or ETV.
When I speak publicly about hydrocephalus, I ask people if they can think of any other disorder that affects patients at virtually any age of life. For many years, we have taken a group photo at the HA conference of everyone with hydrocephalus, and the photo often includes newborns to 90 year olds. Hydrocephalus is a unique problem because it can affect people at any age. The things that we learn about hydrocephalus in children could influence treatment for adults or inform us about how the adult brain responds—or vice versa. This is why I think we need longitudinal studies and registries. I have 20-year-olds doing well with hydrocephalus whom I would like to make 80-year-olds doing well with hydrocephalus. That’s my job—to help my young adult patients figure out how they are going to get to be 70 or 80 years old.
HA: As a long-time member of the MAB, can you share any memories or specific times that you have enjoyed over the years?
WILLIAMS: I think our greatest success and the event that felt the happiest and most successful to me was the 2005 NIH workshop. That got us on the radar screen and brought together a whole range of stakeholders for the first time. We had a very strong working relationship with HA leadership. Dory Kranz; Pat McAllister, PhD; Jack Walker, MD; and I worked with key members of the HA Board to meet with the NIH, and we somehow persuaded them to fund the 2005 conference without submitting an application. We really landed the big one when we did that. For me personally, that was one of the best events that we have had.
In addition, I always enjoy the HA conferences. I think it is fun to watch patients—adults and kids—and their families at the dinner. They always ask good questions of us during the courses, and I think that is an important event for many of us on the MAB; it keeps us grounded. When I give talks to doctors about hydrocephalus and hydrocephalus research, I often show a picture of everyone dancing at the HA dinner and remind everyone that this is why we do what we do.
|Dr. Michael A. Williams, M.D., is Medical Director of the The Sandra and Malcolm Berman Brain & Spine Institute at Sinai Hospital of Baltimore, Maryland. He was recently named president of the International Society for Hydrocephalus and Cerebrospinal Fluid Disorders (ISHCSF). In August 2012 he received a grant from the National Space Biomedical Research Institute (NSBRI) and NASA’s Human Research Program to investigate questions about astronaut health and performance on future deep-space exploration missions. He has served on the Hydrocephalus Association Medical Advisory Board since 2009 and recently co-chaired our 12th National Conferences on Hydrocephalus with Dr. Marion L. Walker. He was Chair of the AAN Ethics, Law and Humanities Committee from 2003-2009.|
|Dr. Williams received his MD and Neurology training at Indiana University Medical Center, finishing in 1989. After a fellowship in Neurosciences Critical Care at Johns Hopkins Hospital, he joined the Department of Neurology faculty in 1991 where he was an NCCU attending physician and also established the Adult Hydrocephalus Center. He served on the Johns Hopkins Hospital Ethics Committee from 1992-2007, and was Co-Chair from 1999-2007. He was on the JHU Bioethics Institute Faculty from 1996-2007. He moved to Sinai Hospital in 2007 to become Medical Director of the Brain & Spine Institute, where he also established and directs their Adult Hydrocephalus Program.|
|Dr. Williams’ research and publications in hydrocephalus represent the systematic analysis of specialized clinical care, and include demonstration of best methods for diagnosing normal pressure hydrocephalus (NPH), evidence that there is significant recovery with treatment; descriptions of new syndromes such as SHYMA, the use of physiologic monitoring to diagnose hydrocephalus and related disorders, and demonstration of the national economic impact of treating or not treating NPH. He co-chaired the first-ever NINDS Workshop on hydrocephalus in 2005, and was on the steering committee for the 2009 NINDS and Hydrocephalus Association supported conference, “Improving outcomes in hydrocephalus: Bridging the gap between basic science and clinical management”. In 2008, he helped create the International Society for Hydrocephalus and CSF Disorders (ISHCSF), hosted their first scientific conference in September 2009, and is currently the President of the ISHCSF. He has either taught or been director for courses related to hydrocephalus and disorders of intracranial pressure at the American Academy of Neurology (AAN) annual meeting for many years. He is actively involved in patient advocacy with the Hydrocephalus Association, and is a member of the Scientific Advisory Panel to the Intracranial Hypertension Research Foundation.|
|While Chair of the AAN’s ELHC, he led the development of updated AAN guidelines for the physician expert witness, an AAN position statement on laws and regulations concerning life-sustaining treatment, including artificial nutrition and hydration, and the addition to the AAN Code of Professional Conduct of a prohibition against neurologist participation in legally authorized executions. Since 2005, he has been the Associate Editor for Ethics for Continuum: Lifelong Learning in Neurology, the American Academy of Neurology’s self-study continuing medical education publication. Dr. Williams has served on advisory committees for the Institute of Medicine, the U.S. Department of Health and Human Services, and the United Network for Organ Sharing. He has given invited lectures at the American Bar Association, the National Academy of Elder Law Attorneys, and at AAAS/Dana Foundation-sponsored Judicial Seminars on Emerging Issues in Neuroscience.|