Grassroots genomics effort is the beginning of culture change at Cincinnati Children’s
We can all visualise what genomic healthcare could look like in the future. Getting there is the big mystery. One organisation is facing that challenge head on. Heide Aungst, MA is Senior Specialist – Outreach & Communications for the Center for Pediatric Genomics at Cincinnati Children’s. Follow CpG on Twitter @CincyKidsGenomX. You can learn more about the results of CpG’s survey at the Festival of Genomics in San Diego.
“The time lag between genomic knowledge development and clinical application is shrinking. Need organizational culture change. #GenomicsFest”
I tweeted those words of Arizona State professor Nazneen Aziz from the Festival of Genomics in Boston.
Her words immediately resonated with me, likely because I knew that – along with my colleagues at the Center for Pediatric Genomics (CpG) at Cincinnati Children’s – we would soon be working on an initiative assessing our own organisational culture around genomics.
But at the Festival, Aziz clearly was preaching to the choir…
Not everyone who could have benefitted from her message was there that June day to hear her passionate words. Missing were those clinicians and organisational leaders who faithfully believe in their mission to keep patients healthy – but are still asking, “What does genomics have to do with it?”
In truth, that question can reverberate throughout even the most progressive and supported organisations – making it all the more difficult to implement true organisational change integrating genomics into both care and culture.
One way to achieve organisational change, of course, is to be topdown prescriptive and programmatic about genomics education and events. And, to be honest, we considered implementing a build-itand-they-will-come approach.
But with CpG’s mission to accelerate discovery and advance knowledge, we wanted to inspire true buy-in across and throughout all levels of our organisation. That’s why we created an initiative that we call “Grassroots Genomics” – with the goal to learn what education and resources is needed where, so that, ultimately, we can build a positive culture that integrates and supports genomics.
In other words, Aziz’s words were really a confirmation of the culture change we had just started.
In many ways, we were ahead of the game because of strong leadership and institutional support. CpG started in 2014 with the appointment of leadership champions, a steering committee, co-directors Peter White, PhD, director of the division of Biomedical Informatics, and John Harley, MD, PhD, director of the Center for Autoimmune Genomics and Etiology, and point person for institutional genomics initiatives, Kristen Sund, PhD, MS, LGC, who developed the Grassroots Genomics initiative.
We launched Grassroots Genomics in July, shortly after the Festival. We started by taking the program directly to our own grassroots: our clinicians and clinical researchers from primary care and numerous specialties ranging from pathology to sports medicine to endocrinology.
At the heart of it is a quick 10-minute presentation and 30-question survey that assesses if clinicians are currently using genomics in any way; what and how they might want to learn about genomics; and if their patients ask about genomics or genetics.
We will use the cumulative results to create institution-wide educational programming and will return division results to the directors, so we can work directly with them to meet their faculty’s needs for integrating genomics into research and clinical care.
With more than 100 surveys in at the time of this writing, we have discovered some interesting perceptions among our clinicians so far (more than half do some research, too).
For example, only 32 percent say they always discuss genomics/ genetics with their patients and almost 44 percent say they never do. But many of those who answer “never” will then answer the question, “What’s the most common question your patients ask you about genetics/genomics?” with “Did I give this to my child?”
This tells us that these conversations are taking place perhaps so commonly that even physicians aren’t thinking about the fact that they really are talking about genomics and genetics more than they recognise. And it also tells us that our patients and families know the importance genetics plays in family health history. They may not understand the specific terms “genomics” or “genetics” but they understand the foundational concepts of inheritance.
But perhaps even more telling is the startling statistic that about 33 percent of our early responders say they don’t feel comfortable discussing genomics with patients. Many say it’s both lack of understanding on their own part and lack of resources to share with patients.
We believe strongly that we need to start now with building community trust around genomics with education so that when it is more widely used in the clinic – beyond rare disease and cancer tumor sequencing – our community not only doesn’t fear it, but understands what it is and why it’s important.
We know that there has always been some mistrust of research, especially among some community residents. Our genetic counsellors report that one of the most common questions they get when consenting patients for research is: “Are you going to clone me?”
But to achieve that level of education and trust, we need to start with our clinicians who interact every day with the community. We need to have our own clinicians understand and trust genomics first.
We have had some great stories come out of this initial effort. After presenting to Sports Medicine, we received an email from a clinician who missed the talk. He was working on a research project to look at understanding the underlying gene expression that drives motor performance and resultant injury-risk biomechanics. And, he needed to make connections to collaborate with someone who could help him do that research, since he didn’t know where to begin.
It’s making those connections throughout our institution – truly from the research lab to the clinic – that makes our Grassroots Genomics effort worth every minute.
And, perhaps most rewarding is even when we go to departments who believe they will never use genomics in their specialty. And, I confess, sometimes we wonder, too, how it could possibly be used in some areas.
One of those was when we met one-on-one with our new chief of the Emergency Department. We seemed to have a similar thought at the beginning of the discussion. “How would genomics even play any kind of role in the ED?” But soon, we found common ground in research we support in sepsis and the growing potential of pharmacogenomics, especially around pain management.
Will genomics be used in an emergency room tomorrow? Not likely. But sometime in the future? Definitely! And, we believe that now is the time to start introducing it and shifting our organisational culture today. n