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If You're Not Part Of The Soluton

July 7, 2010

By Jennifer Phillips, Ph.D.

Editor's note: This is a planned public debate between Mark Dunning and Jennifer Phillips, the two primary contributors to this blog. The ideas expressed in the posts during this debate will be purposely provocative and unfinished to invite a response from the other party. We hope you find the discussion valuable. are, as they say, part of the problem (science geek variant: "you're part of the precipitate."). The funny thing about this debate is that Mark and I are not arguing from very polarized positions. We have a common goal (improving communication between patients, physicians and scientists), we recognize many of the same problems (communication between these groups can be challenging), and we more or less agree on the broad strokes of the solutions (everyone needs to work harder at transparency and full disclosure). Where we differ is in the details of this last category, mostly because while I agree with the basic ambition of facilitating communication on global efforts to find a cure for Usher syndrome, there are some undeniable hindrances to fully achieving that goal. I dealt with some of these issues in my first debate post, so I won't rehash them except to say that it will be difficult to completely solve this particular problem without addressing several larger, overarching challenges, such as the inherently unpredictable pace of biomedical research, the competitive nature of research funding, and society-level problems with science communication. That said, even a foregone conclusion of limited success is no reason not to forge ahead and do what we can to improve the situation. "Difficult" does not equal "Impossible".

So, if we agree that change needs to happen, and that we have the power to influence this happening, let's start talking about HOW it should happen. I'll begin by addressing improved Doctor-Patient communication, which, to me, can be broken down into quantitative and qualitative components.

I have heard only a few stories recounting the Usher diagnosis experience, so my sample size is small. However, all that I have heard, including all that Mark and our readers have shared on this blog, have been infuriating and frustrating, and if they are (and I have no reason to doubt that they are) indeed representative of the average Doctor-Patient encounter, then this is an area that screams out for improvement.

The quantitative problems that have been described center on a paucity of information or resources, while the qualitative shortcomings have to do with the tone or demeanor of the doctor-patient encounters. Families are broadly and cursorily informed of an incurable condition and left, it seems, to work out the details on their own. In my opinion, any visit to a health care provider that ends with the patient's family frantically 'Google-ing' for answers is an abject failure. We can do better.

We want to improve on both the volume and the worth of information that Usher patients get from their health care providers, from the first diagnosis onward. Furthermore, we want to improve the way in which it is delivered. Current, comprehensive, evidence-based information about Usher itself and locally available resources for coping with it, presented compassionately and optimistically, would certainly go a long way toward delivering the message of hope we are seeking.

Working within the parameters of the current American health care system, a top-down approach to solving this problem would include:

  1. Compiling information and resources on Usher syndrome that would encompass both national and regional information. This would probably need to happen through the NEI or the FFB or some large-ish, well-connected entity at the national level, and would be modified with input from regional specialists and providers. Such information should be in the form of both printed and web-based material, and should be updated regularly.
  2. Training a broader segment of physicians to become familiar with these resources and to standardize the dissemination of this information to families with an Usher diagnosis. Continuing Medical Education is a requirement for everyone holding a medical license. Ophthalmologists, Otologists, and all other providers who see Usher patients, especially if such patients are outside of their primary specialty, need to have regular access to current information on Usher research, specialists in their area, and so forth.
  3. Prompt delivery of this information to patients and families. It seems to me that it would be a huge assist for the doctor if he or she had a concrete and comprehensive repository of information to offer and refer families to at any point in the process, but particularly at the initial diagnosis. This would take at least some of the pressure off of the provider to deliver all relevant information off the cuff, and off of the families to hear and process this information during a highly emotional encounter. Instead of navigating unguided through the vast, confusing, and often inaccurate morass that is the Internet, families would be given virtual destinations, in addition to helpful local or regional contacts.

Overall, current, comprehensive, evidence-based information about Usher itself and locally available resources for coping with it, presented compassionately and optimistically, would certainly go a long way toward delivering the message of hope we are seeking. Such an endeavor would require input from a broad array of professionals and family advocates, and it would likely be a fairly complex and protracted process...but it is inherently possible.

The above proposal is deliberately presented in very broad strokes. I have specific ideas for each component, but I hope that leaving the details out for now will allow you, readers, to formulate some specifics of your own. Think about it. Discuss the pros and cons of such an endeavor with the families and professionals you are in contact with. Figure out what you can do to contribute to creating this resource, if you think it's a worthwhile cause. And if you don't, think of a better alternative. In short, be a part of the solution. I look forward to hearing your ideas.

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