Get involved in NSGC – start by joining a SIG!

By guest blogger Karin Dent, NSGC President Elect.

Hello Everyone! I would like to take this opportunity to introduce myself to you. My name is Karin Dent and I am President-Elect of NSGC. I graduated from the University of Pittsburgh Genetic Counseling Program in 1998. Since then I have been employed at the University of Utah Department of Pediatrics. My involvement with NSGC began as a member of the Pediatrics SIG in 1998 and continued for several years. To me the SIG was a group of experts I could turn to for professional advice and guidance as I was finding my place in the pediatric counseling world. It was exciting to be a part of a group of colleagues who were interested in many of the same issues as me.

For many years the SIGs have continued to be a great place for NSGC members to become involved in their professional organization. SIGs provide opportunities for networking, professional development, and development of leadership skills. The number of SIGs has increased significantly over the past 10 years, and as a result the volunteer opportunities available to NSGC members continue to grow. Several times the NSGC has turned to SIGs for expert advice in their specialties or areas of interest. And we should be utilizing the SIG expertise even more. The SIGs are uniquely qualified to educate and update their members as well as the general NSGC membership on cutting edge science and technologies, as well as identifying emerging trends in specialty areas.

We have created a plan, called the SIG Enhancement Strategy and Implementation Plan, to further utilize the unique abilities and resources that exist in SIGs, promote and develop their leadership, and enhance the SIGs’ contributions to NSGC and our profession as a whole. This plan was developed by NSGC leaders as well as a SIG Governance and Enhancement Strategy Task Force that consisted of four SIG chairs (Leigha Senter, Cancer SIG; Martha Dudek, FIT SIG; Jessica Mester, Pediatrics SIG; Emily Edelman, Personalized Medicine SIG) representing various-sized SIGs and years of establishment. In addition, Sheetal Parmar, NSGC Membership Committee Chair, represented the interests of the NSGC general membership. The purpose of the SIG Enhancement Strategy and Plan is to ensure the expertise and resources within NSGC’s SIGs are being translated to the general membership, develop additional leadership opportunities within the SIGs, and further increase the value of SIGs to NSGC members and the genetic counseling profession.

The SIG plan will be discussed in detail on a call with the SIG Chairs on November 18. Some highlights of the plan include:

- The assignment of annual charges to all SIGs. These charges will help guide the SIGs in developing their education goals, contributions to NSGC’s strategic plan, and in providing benefits to the SIG members.

- Increase of the minimum number of individuals required to establish a new SIG to 15. A potential new SIG with fewer than 15 individuals may choose to start as a subgroup under a larger umbrella SIG. This would allow that group time to recruit additional members, develop projects, and foster leadership development and mentoring by the umbrella SIG chairs.

- Annual self-evaluation. This will help SIGs assess their progress over the year and assist them with setting their goals and objectives for the following year.

- SIGs will be led by a Chair and Vice-Chair in which the Vice-Chair becomes Chair the following year. This staggered governance structure will allow continuity of leadership and streamlined transition in leadership and strategic projects.

2011 will be a transition year for the NSGC SIGs as we implement this plan. If you are looking for a way to get involved with NSGC, consider starting with a SIG. You may find a collaborative group of experts who share similar professional interests. You may be able to work on a task force, create an educational program for the organization, network and develop leadership skills, and most importantly, share your expertise with the entire organization.

I am looking forward to leading our great organization in 2011. I am excited to meet and get to know more of the many wonderful genetic counselors who make up our diverse society.

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!

Leadership

Many times in this blog, I have commented on how important leadership is for genetic counselors. We are a small profession. We don’t have the luxury of sitting back and letting others forge the path for the rest of us to follow. We all need to find ways to be leaders whether it is through the NSGC, our own institutions, or our own communities.

I recognize that not every genetic counselor has the confidence or the experience to begin leading. Some of you might be wondering “where do I even start?” If that question resonates with you, you will be glad to hear that the NSGC will begin creating a leadership development program in 2011. The details will be determined by the 2011 Membership Committee, but the proposed objectives are to empower our membership with leadership skills to become effective leaders in their own careers, the profession, and the NSGC. We hope to leverage the advanced skills of some of our more senior members to mentor others.

However, you don’t have to wait! There are many opportunities right now to start building leadership skills; the NSGC has always provided these opportunities as a benefit to its members. I started out helping to plan one session on marketing at the AEC in 1998. At the time, I knew very little about marketing, but my role was solely to identify some good speakers to contribute and coordinate the event. I remained involved with the AEC every year in one capacity or another, meeting genetic counselors across the nation and learning valuable project management skills. In 2002, I ran for an NSGC Board position and, to my surprise, won. I have no doubt that the network I had developed through my prior NSGC roles contributed to that opportunity. Serving on the NSGC Board from 2002-2004 gave me exposure to strategic thinking and great mentors as well as allowed me to enhance my project and team management skills in coordinating a regional meeting. The experience led to my decision to return to business school to enhance my leadership skills. I can’t help but wonder how much my first NSGC experience coordinating a marketing session contributed to my choice. It has all come full-circle.

Members often tell me that they don’t know how to get involved. I encourage you to start contacting NSGC leaders now. Some key resources are Committee Chairs and SIG Chairs, but Board members can also help direct you to the right person. You can find a list of these leaders on the NSGC website under the “About Us” tab under “Society Leaders” at http://www.nsgc.org/about/Whos_Who_2010.cfm.

Be assertive. Don’t just send one email and then drop it if you don’t get a response. Pick up the phone or email again. Everyone is busy, but all NSGC leaders are willing to help you navigate to the right position for you. And remember, a true leader doesn’t wait for someone else to take charge of his or her own career.

The other side of access: service delivery models

As I have written many times in this blog, expanding access to genetic counselors is a top initiative of the NSGC. Many of you realize that there are multiple potential barriers to patients who may benefit from talking with a genetic counselor. We have several initiatives pending to improve coverage of genetic counselors’ services (including the initiative I wrote about July 23, 2010), but we also have a task force dedicated to identifying different ways patients can access genetic counselors. The NSGC “Service Delivery Model Task Force”, led by NSGC member Stephanie Cohen, is attempting to identify existing methods genetic counselors use to communicate with patients, such as face-to-face or telephone counseling.

Although the most common models counselors use to communicate with patients are probably face-to-face and telephone-based genetic counseling, there are other models that exist including videoconferencing, internet-based, and face-to-face group counseling. There may even be some novel methods that most genetic counselors don’t realize are available or effective.

Many genetic counselors prefer to provide face-to-face genetic counseling for a variety of reasons including better communication of complex concepts and ease of psychosocial assessment. However, any genetic counselor who has practiced for a significant amount of time knows that there are always some patients who can’t take advantage of face-to-face genetic counseling. Sometimes patients live in a rural area without a genetics service within reasonable driving distance. Other times, a patient’s work schedule does not allow him or her enough time for an in-person appointment during work hours. Some patients may just simply not understand how a session with a genetic counselor will help them but would be open to an exchange over the phone or email to learn about how they might benefit. All of these are reasons why genetic counselors should consider other methods for delivering their services.

We also need to evaluate delivery models from different points of view. It is obviously important that patients be able to reach genetic counselors through a proposed delivery model, but we also have to think about efficiency. How long do patients have to wait for a particular method of delivery? What factors contribute to that wait time? How are different delivery models reimbursed? These are all critical questions to determine whether a delivery model will truly increase access.

In addition to how genetic counselors communicate to patients, there are also different modes through which patients are referred. Most of us think of the individual physician referring the patient to a local genetic counselor, but some physicians work with genetic counselors in laboratories or at a genetics center to help them triage patients to determine which patients need to meet personally with a genetic counselor. Both referral models and counseling delivery models are important to understand if we want to find efficiently collaborate with other health care providers.

The Service Delivery Model Task Force needs your help! Please take 10 minutes to complete a survey: http://www.zoomerang.com/Survey/WEB22AYQ94SBFE. The survey includes questions that address all of the points above, and the Task Force can’t start its work without input from NSGC members in the trenches. Please help us move forward on this important initiative.

FDA Oversight of Genetic Testing

Many NSGC members are aware of the public meeting the FDA held on July 19-20 to gain input from stakeholders about oversight of laboratory-developed tests (LDTs). I was proud to represent the NSGC and excited to hear the many positive references made to the role of genetic counselors. I want to share some highlights from the meeting.

The meeting opened with an overview by FDA officials of the history of oversight of LDTs, which they defined as tests designed, manufactured, and utilized by a single lab. (Some of you may recognize the term “home brew”, which has clearly fallen out of favor!) Obviously, there are many types of tests in the LDT category, but genetic tests are one type. The FDA has practiced “enforcement discretion” over LDTs historically because most LDTs were performed by hospital-based labs with small test volumes and close communication between the lab pathologist, clinician, and patients. Over the last two decades, the environment has changed. The volume of LDTs has increased dramatically, and LDTs are offered and marketed by large-scale commercial labs with less communication with the ordering clinician and the patient. There is also an increase in use of accompanying complex software and multiplex testing and more emphasis on predicting disease rather than diagnosing disease based on symptoms. Therefore, the FDA representatives stated that CLIA oversight of laboratories is no longer sufficient to protect the public, and the FDA has decided to invoke its oversight authority over LDTs.

However, the FDA speakers were careful to state that they have made no final decision in regards to how LDTs will be regulated, and they held the public meeting to seek input from a broad range of stakeholders.

Outside of clinical laboratory professional organizations, the NSGC was one of only two professional associations to present. I presented the NSGC perspective based on the discussions that the Public Policy Committee has had on regulation of genetic testing. While some increased regulation is likely needed to address the expansion of genetic testing into tests for common disease and pharmacogenetics, it will be important for the regulations to maintain access to genetic testing for rare disease or genetic variants affecting small populations. In addition, regulating testing alone will not address the risk of misapplication or misinterpretation of genetic testing results by individuals without specialized training in genetics and counseling.

Many of the stakeholders referenced the value genetic counselors bring to patients and doctors. Two consumer advocacy groups mentioned the value of genetic counselors, and an expert panel on the topic of “Patient and Clinical Implications” discussed that many healthcare providers don’t have sufficient training to interpret many of the new LDTs. The spokesperson for the Ovarian Cancer National Alliance served on the panel and specifically stated that her organization tells patients that they should talk with a genetic counselor prior to genetic testing.
Overall, the meeting was an important one for genetic counselors. The outcome of the FDA’s actions will have significant impact on the practice of genetic counseling. In addition, the NSGC’s presence at the meeting as one of the only professional associations in attendance demonstrated genetic counselors’ commitment to protecting patients and the high standards of the profession.

For more feedback on the meeting, you can review NSGC tweets on Twitter by following NSGC_org. Also, the Public Policy Committee has posted a blog on the House of Representative’s Energy and Commerce Committee hearing on DTC genetic testing and can be found at http://nsgcpublicpolicy.blogspot.com/.

Expanding our reach through collaboration

In the 2009 Vision Survey of NSGC members, respondents rated billing and reimbursement efforts as the top strategic initiative the NSGC should pursue over the next 3-5 years. On federal and state levels, progress is clear with 13 states having passed licensure legislation and many more preparing to introduce bills. We are actively seeking a congressional sponsor to introduce federal legislation to amend the Social Security Act to recognize genetic counselors as providers under Medicare. However, efforts with private payers have been initiated mostly by individual NSGC members, so the time has come to organize a strategic effort to approach private payers to cover genetic counselors’ services.

In our preliminary talks with payers we have encountered two repeated concerns from their leadership, 1. there is limited formal data to demonstrate the importance of covering genetic counselors’ services, and 2. not all of their health plan’s members will have access to a genetic counselor. As a not-for-profit professional association, we have finite resources to address these challenges.

One way to expand our organization’s resources is through strategic partnerships, and there is an organization that has experience and assets in working with payers. In June, The NSGC Board approved a collaboration with Informed Medical Decisions (IMD), which is a for-profit company that offers telephone-based genetic counseling by ABGC-certified genetic counselors. IMD has already had success in writing contracts and policies for third-party payers to cover and, in for some tests, require pre-test genetic counseling prior to authorizing genetic testing.

The NSGC Payer Task Force will lead an effort on the NSGC side to approach third-party payers with IMD to write coverage policies to cover genetic counseling. IMD has agreed to share lessons learned from its own negotiations with payers as well as outcomes data on genetic counseling patients that payers will want to see. They also provide a solution to the concern payers express about access to genetic counselors in areas where face-to-face counseling may not be available.

We recognize that many members will have concerns that payers will favor telephone counseling over face-to-face counseling. Therefore, one important point to emphasize is that the NSGC and IMD will approach payers to cover genetic counseling provided by Certified Genetic Counselors. IMD policy does not advocate for telephone-only access to genetic counseling and does provide referral to local genetic counselors when positive results or family situations indicate that an in-person visit is optimal. There will be no favoring of telephone over phone counseling and we will provide guidance to payers regarding counseling scenarios where telephone counseling is inappropriate. In fact, for many payers, phone services are more expensive and easier to game than face-to-face services, so they do not have an inherent incentive to favor telephone services. In addition, once genetic counseling is a covered service, it opens the door for coverage in a variety of service delivery models, so we expect the demand for genetic counseling services overall to grow.

The collaboration with IMD is non-exclusive, so others parties could join us if we deem it beneficial to the NSGC, and we will perform regular evaluations of the NSGC/IMD effort to assess whether the NSGC is achieving tangible, beneficial outcomes for its members. No money is changing hands as part of this collaboration, and the NSGC is under no obligation to continue the effort if the objectives established at the beginning are corrupted in any way.

The NSGC leadership recognizes that this is a big change for the NSGC. While we regularly accept sponsorship dollars for companies’ advertising and exhibits, this is the first time we will work with a for-profit company with the goal of achieving a specific strategic objective. We know that there is risk in lending our credibility to another organization and have put the appropriate controls and people in place to monitor progress and ensure our goals are being achieved. We believe fundamentally that we need to band together as genetic counselors to demonstrate that we bring critical value to patients and providers. NSGC’s collaboration with an organization that is, after all, a provider organization of genetic counselors with no financial ties to other genetic services such as testing, will help us achieve our goal of promoting the role of genetic counselors as quickly and effectively as possible.