IGCLC HDGC Clinical Guidelines Update Workshop: 2014 Nijmegen, The Netherlands

From March 19-21, 2014 I had the pleasure of participating in the 2nd Consensus meeting on Hereditary Gastric Cancer at the Radbound University Medical Centre in Nijmegen, The Netherlands. It was an honor to be invited to chair the newly formed Patient and Dietician workshop group to present and discuss a patient viewpoint on how effective the current guidelines are, and what outstanding issues remain to be addressed in research and clinical management. The addition of the Patient and Dietician group was a significant step forward in identifying and addressing the many issues that impact the health and quality of life of HDGC patients and families world wide. One of the many things I learned through my workshop experience is that HDGC advocacy is critical in making meaningful forward progress for the patient community.

In attendance were 47 people representing stomach cancer research and medical professionals, including gastroenterologists, surgeons, geneticists, counselors, dietitians, and pathologists, along with a group of patient advocates. The group represented countries throughout the world, including the United Kingdom, the Netherlands, New Zealand, Australia, Germany, Denmark, Italy, Canada, Portugal, Switzerland, France, and the USA.

The group’s goal while there was to make important updates and changes to the last consensus guideline for HDGC that was published in 2009. The specific group disciplines included gastroenterology, surgery, genetics & basic science, counseling and psychosocial aspects, and pathology. It was wonderful, from a patient advocacy perspective, to be representing the dietician and patient perspective for the first time in this workshop.

Personally, this was one of the most memorable experiences of my lifetime. I was excited to be able to contribute to the new updated guideline. Working side by side with so many of the scientists and researchers who had been helping me and my family, and supporting my HDGC advocacy work for the many years following my family diagnosis was a joyous experience. The entire work group was full of amazing people: brilliant, caring, compassionate, and fun people who are committed to their work focused on HDGC in their particular discipline. And, they value the patient perspective. It was very clear that the patient voice is a strong voice.

As an advocate for the HDGC patient community, what was most rewarding was the contribution that I could bring to many of the various discipline areas, not only the Dietician and Patient group. This was a result of the input and feedback that I have accumulated from many years of working with so many patients and families spanning the globe. A few examples: updated criteria for genetic testing, inclusion and acknowledgment that prenatal diagnosis (PND) and preimplantation genetic diagnosis (PGD) are options, a section about post-gastrectomy symptoms and treatment options, a supplemental endoscopy protocol for patients to share with the GI doctors who are not familiar with HDGC, and more. I learned a lot too, and was fascinated with the way our cultural differences impact health care treatments and guidelines.

The workshop spanned three days. Much to my surprise it took about a year from the actual workshop to the completion and publication of the updated guideline. The workshop itself was a tremendously productive start, but there was still a lot of work to be done. Further discussion, debate, drafts, revisions, confirmed consensus of all contributors, and finally publication. It felt like a long wait, but totally worth it!

I’m excited and already preparing for the next HDGC Guideline update workshop in March 2019. Can’t wait!

I’ll say it again. Without a doubt, this experience reinforced my notion that the patient advocacy voice is a strong voice. I encourage everyone in the HDGC community to Make Your Voice Heard!

Learn more about the HDGC Clinical Guidelines.

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