#SCGC19 Reflections

I arrived at the University of California, Los Angeles (UCLA) campus at around 7:30 am. The skies reflected the “June Gloom” that characteristically preludes the warm summers in Southern California. Despite the eerie fog that sat low on the cute little houses (it might be more accurate to refer to them as small mansions), the looming brick buildings of UCLA’s campus make it feel more like fall than the cusp of summer.

Sitting in the Garry Shandling Learning Studio (yes, the actor who played the Hydra-Associated Senator from Iron Man 2 and Captain America: Civil War), amongst genetic counselors, who range in experience from prospective students to 20 plus years in the field, I was surprised with how many familiar faces I actually recognized. In fact, this was the first time I met face-to-face with some of the most influential people in my journey to pursue genetic counseling!

The entire program was incredibly interesting. The research-based presentations really reflected how incredibly exciting it is to be entering this field at a time where gene therapies are no long spoken about as hypotheticals, but in a way that discusses actual results! What a wonderful world we live in with the knowledge and technology to re-write out genes and give people a second chance at life. How lucky am I to be able to witness this exponential growth in the field, and to see the impact this innovation has made on the the lives of so many patients, parents, and caregivers.

But what really resonated with me personally were the presentations on the impact and potential of digital marketing and social media on the patient experience.  

There was a panel on navigating patient communication and expectations through the context of social media. This was particularly interesting for me, especially since I have recently experience the impact of social media on the patient experience through my work interning as the advocacy outreach intern with Grey Genetics.

The panelists included patient and caregiver advocates and Erica Ramos MS, LCGC (who was one of the first GC’s I connected with on twitter!). This panel illuminated the need for healthcare providers to be active on social media, if anything to help to provide patients with validated medical resources and to help fight against the prevalence of “Dr. Google”. It also provided the unique perspective of how social media can harm patients and caregivers, in a way that I think is unique to the rare disease and chronic illness community, and distinct from the usual stories we hear about the toxic culture of social media. The idea of privacy (or the lack thereof) was discussed by each panelist, and was culminated in a presentation by Erica Ramos that discussed Facebook’s lack of protection of “private” health information contained in support groups that are often hosted on the Facebook platform. She warned that Facebook’s allowance of private health information to be downloaded by third parties was discouraging patients and caregivers from turning to the support groups, especially amongst the cancer support group communities. This was alarming, and while not surprising (you’re not crazy, your phone is listening to you and that is why you get targeted ads), was concerning with respect to GINA and other larger implications regarding the sharing of genetic information.

This was expertly followed by a presentation from a digital marketing representative from Global Genes. She discussed the logistics of digital marketing and how it can impact the patient experience and patient resources, especially when it comes to the rare disease community. What I really enjoyed from this presentation was the idea that “stories build communities”, and the emphasis on the power of social media to connect families from across the globe––something that has undoubtedly allowed for the incredibly accelerated innovation regarding the treatment and management of disease. Science is collaboration, and social media, while having its own pitfalls, has been instrumental for what, I believe, is the most collaborative era of modern science.

I left this entire experience feeling so overwhelmed and grateful for the community of genetic counselors and students that I have connected with through my blog and other social media outlets. Hearing the presentations from patients, caregiver, advocates and people in the industry really showed me that the patient experience has changed drastically because of social media! The internet and social media platforms have allowed patients to really have more autonomy when it comes to their medical decisions, it has empowered them to advocate for themselves, and has changed how and where patients can access support. But I, and other members at the conference, couldn’t help but wonder was whether healthcare providers have adapted to this change. I have spoken on how active the genetic counseling community is on Twitter several times, but I recognize that this may be because the majority of genetic counselors are young professionals! I started to wonder if doctors, nurses, social workers, etc. were doing the same to put themselves out there and to make themselves accessible to the patients they served.

In a conversation I shared with Erica Ramos later that afternoon, we discussed the impact of social media in spreading awareness about the field in general. We talked about the potential social media had in telling, not only patients but prospective students, about genetic counseling, and it really humbled me to know that I get to be part of that movement. There were so many instances that day of people, who I had never met before, stopping me to introduce themselves as one of my Twitter/Instagram/Blog followers! It was kind of surreal to see how many people have read my blog or follow my story, and incredibly humbling to see the reach of my blog in a tangible way. But most of all, their words of encouragement really reminded me why I started this blog in the first place; to spread awareness about genetic counseling, to be transparent about what it takes to be a genetic counselor, and to represent my story in the hopes that it could inspire or guide another person’s journey towards genetic counseling.

Thank you so much to the Southern California Genetic Counseling executive board and volunteer staff for putting on such a wonderful event! To everyone I met that day, I look forward to our next interaction! Thank you for filling my social-media-presence-cup.