Reflections on the AEC: Patients as our Teachers

At the NSGC’s recent conference in Dallas, I had the opportunity to meet with several participants in the Genetic Alliance’s Advocates program, through which patients, professionals, students and others from outside the genetic counseling profession are invited to apply for sponsorship to attend the NSGC’s annual conference and observe what genetic counselors are learning.

I quickly realized that the counselors, often in the role of educating patients, had become the students. The Advocates had many suggestions for us. They liked the sessions where patients’ perspectives were shared, such as the Rollnick lecture where Ian Brown spoke about how his son’s disabilities had taught him the value of the simplicity of human connection or the poignant story about different expectations of access to Canavan testing due to gene patenting. However, they commented that patient viewpoints should be integrated into our education as a conversation rather than as a separate voice brought in to lecture.

We spoke also about the need to translate. Medical professionals often use the phrase “dumbing down” when referring to how they present information to patients. I’m sure many of the readers of this blog will recoil at the phrase, yet do we think proactively about translating rather than simply explaining? Or integrating genetic information into the other factors of a patient’s life? Patients experience with genetic disease is different from ours. We have no more right to impose our language upon them as they do to dismiss our perspective as a professional.

The Advocates shared that they would like to be able to more easily find genetic counselors within the specialty areas for research purposes, for individual counseling and other reasons. They want to partner with us to advance progress in understanding the genetic etiology of disease. (We even spoke briefly about the new Find-a Genetic-Counselor tool on www.nsgc.org, which allows a search not just by geographic area but by specialty. However, even advanced search tools are only as good as the data they search, so I’m going to take this opportunity to remind you to update your profile – all four tabs. Login and click the “update my profile” link in the top right-hand corner.)

I extend my thanks to the Genetic Alliance for its coordination of the Advocates program and challenge us all to think about how we can partner with patients to better educate ourselves to serve them better.

NSGC launches new website!

On October 4, 2010, I woke up feeling like a five-year-old kid on Christmas Day. But instead of rushing downstairs to tear open the presents under the tree, I rushed to my computer, logged on, and typed www.nsgc.org into my browser. And there it was…our new website! I guess my priorities have changed since I was five.

Of course, I’d seen the production site numerous times over the last month as our committed Executive Office team and volunteers from the Communications Committee’s Website Task Force made incremental improvements to the artwork, navigation, and messages on the site. But there was nothing like seeing it go live for the first time knowing that I can now proudly refer doctors, patients, the media, policymakers, payers, prospective members, students – you name the audience – to the NSGC website.

The website is a big step toward implementation of our branding effort, which I have written about many times in this blog beginning with my guest entry in September 2009. (see below) Therefore, while the website will serve multiple audiences, the focus is on physicians, who are the primary gatekeeper for patients to learn about genetic counselors’ services. The NSGC leadership believes we can best serve our members by promoting the profession and encouraging doctors to refer patients to genetic counselors.

However, I’m excited to tell you about the enhanced benefits the website will offer members! The crown jewel among these is the Find-a-Genetic-Counselor tool, which allows you to search the entire NSGC membership database by partial name, geography, type of specialty, work setting, zip code, etc. Members can also email each other directly using the directory search. The tool is updated daily to include recent new members and information updates you make to your member profile. Keep in mind that if you opt to exclude your information from the public listing, members will have to be logged into the website in order to find you. You can find additional information about updating your profile and how to use certain features of the site at http://www.nsgc.org/MemberCenter/tabid/66/Default.aspx .

The NSGC will also to continue to improve upon the site from the version we have right now. Over the next few weeks, the NSGC Communications Committee and Executive Office invite your feedback. They will review all the feedback collectively after the AEC to prioritize additional changes to make. We ask for your patience while we collect the feedback in order to use our resources as effectively as possible. As always, feedback or questions about difficulties can be emailed to nsgc@nsgc.org or by calling the Executive Office at 312-321-6834. The Executive Office is ready to answer personalized questions that you have, and volunteers will be staffing the NSGC booth at the AEC to help familiarize you with the site. Most of our members’ concerns have been quickly resolved once they call, so we encourage you to do so.

I’m looking forward to seeing many of you at the AEC next week in Dallas. In the mean time, please visit www.nsgc.org and see you in cyberspace!