The Challenges of Championing Digital Tool Adoption in Genetic Counseling

As the heart of their departments, genetic counselors are innovators pushing for digitization at their institutions and navigating significant challenges on the road to digital adoption and implementation. PhenoTips’ Genetics Workflow Consultant Erica Peacock draws on her training as a genetic counselor, as well as her work assisting genetic counselors seeking digital tools for their department, to address these challenges and offer guidance.

Sitting at the intersection of patient care and medical innovation, genetic counselors offer unique perspectives to their departments. Their experience on the front lines of medical genetics motivates genetic counselors to champion change in their departments, often making them the first to propose the use of digital tools to supplement their practice.

Advocating for change is challenging. Genetic counselors face many roadblocks on the journey to digital tool adoption. From change-hesitant attitudes to budget, genetic counselors must navigate a series of hurdles in order to enact the change they understand to be essential to their institution. To understand why so many genetic counselors are rallying for digitization and how they can overcome barriers to implementation and adoption, we sat down with PhenoTips’ Genetics Workflow Consultant Erica Peacock, who uses her background in genetic counseling to help genetic counselors go digital with PhenoTips.

Key takeaways:

• The benefits of digital tools in genetic counseling practice are often worth the initial adoption hurdles
• Creating a business case is essential to receiving support when adopting digital tools, but it does not have to be done alone
• Rally support from your genetic counseling peers and consider tools with cross-department functionality
• Leverage the assistance offered by providers of digital tools to ease adoption and implementation
• Evaluate the options that are available, being curious is the first step

Genetic Counselors as Digital Champions

Genetic counselors frequently play the role of innovator in their departments and institutions. In Erica Peacock’s role ensuring customer success at PhenoTips she often works with genetic counselors who are the first among their colleagues to seek out digital solutions.

When asked why she thinks genetic counselors are so often championing digital innovation, trained genetic counselor Erica Peacock posits, “Genetic counselors are the heart of their departments. They’re the trailblazers, they’re used to being the first to do certain things.”

Through her experience, Erica has noticed that genetic counselors are not only in touch with the current workings of genetics research and practice, but also anticipating a fast-approaching future in which genetic testing will be offered alongside routine patient care. This awareness, along with a deep understanding of how the proliferation of genomics would impact their services, makes genetic counselors particularly primed for innovation.

“I think what motivates them and why they are the heart of their departments is that they understand what needs to happen for mainstreaming, and for population-level genetics to actually happen. We need digital tools to help scale those services,” says Erica.

Aside from a desire to be proactive, genetic counselors are drawn to digital tools for a number of benefits that can impact their departments immediately, including improved data security, time savings, built-in collaboration, structure and organization, and more.

“Genetic counselors are the heart of their departments. They’re the trailblazers, they’re used to being the first to do certain things.”

“There are a lot of benefits to adopting digital tools, specifically in medicine,” says Erica. “Whenever you’re working with physical patient records there’s always the risk of data getting compromised. A piece of paper could fall out of the record or a fax may be intercepted and there’s no way of knowing about it. Digital records are housed on secure cloud servers and there’s a built-in versioning history, as well as an audit log, so you can see who has accessed which data as well as who’s edited a record and when.

“Think about all of the time you spend with paper records on printing, faxing, mailing clinical letters, and then imagine replacing that with an export button where all of the information you’ve already recorded about your patient goes to one document that you can share with whoever you need to. And then, with patient-facing tools, collecting family and medical history ahead of an appointment can really save someone time, as well as having the patient’s pedigree pre-drawn for you so you can review it as opposed to drawing it from scratch.

“Some folks are using PhenoTips to build retrospective cohorts. Harnessing structured data, you can filter through PhenoTips based on different parameters, including genetic test results, phenotype, and diagnosis. Structured data also improves variant analysis for exome sequencing; if you can provide the lab with that structured and detailed phenotypic data it assists in variant analysis. Additionally, one of the more obvious benefits of structure is less time deciphering handwriting and typos and more time using available information for patient care.

“The other benefit is data-driven decision support aids. Having these tools built into your EMR that can help you narrow down the differential diagnosis, suggest which genes to include in a panel test, keeping your pedigrees neat and legible, that’s all part of the decision support.”

Roadblocks to Digital Tool Adoption in Genetic Counseling

Although digital tools can be hugely beneficial to genetic counseling practice, genetic counselors taking on the role of “digital champion” in their institution often face pushback from department heads, hospital executives, and even their fellow genetic counselors.

In Erica’s experience, one major source of inertia is change-resistant attitudes stemming from a fear of the unknown.

“Changing the status quo can be really difficult when you’re used to doing things a certain way, and the idea of adopting a digital tool is scary for some people. Digital tools are still relatively new, and there can be an attitude of ‘if it’s not broken, why fix it’ when it comes to changing current workflows, but I don’t think everyone always knows their blind spots and it’s hard to see the benefits without trying out the digital tool.”

Genetic counselors, like many medical professionals, are pressed for time and intentionally focused on patient care, making the initial learning curve of adopting a new tool understandably daunting.

Erica states, “There usually is a big learning curve up front but a lot of folks notice the benefits highly outweigh the drawbacks once they get used to it.”

Change-resistant attitudes are often amplified by external factors, Erica notices, “There are a lot of media stories about data leaks and breaches that inflate our perception of the security risk. But when health information is inaccurate or unavailable, when you don’t have digital tools and data is unstructured there’s a high likelihood of making errors and that can result in harm to the patient.”

With this in mind, PhenoTips and other medical software companies take great measures to mitigate security risks. PhenoTips, for example, is HIPAA and GDPR-compliant as well as Cyber Essentials Plus (CE+) and Data Security and Protection Toolkit (DSPT) certified. In addition, the PhenoTips team works with your team to explore all of the available options, including authentication requirements and integration with the existing systems your institution uses.

“It can feel really scary to try to gather all of these different departments to try to implement this tool, but we have teams for this and we’re used to doing it,” Erica explains. “We have implementation teams that will work with your IT team to get the software up and running, as well as support channels. So once you go live there’s support on our end to troubleshoot and answer any questions that come up.”

Overcoming Obstacles and Going Digital in Genetic Counseling

Genetic counselors willing to change their workflows to reap the benefits of going digital now face the daunting task of receiving approval from the executives, decision-makers, and budget holders at their institution.

In order to receive approval and funding, genetic counselors like Dr. Amy Taylor, a PhenoTips user and digital champion at Cambridge University Hospitals NHS Foundation Trust, must make a business case.

“Sell the advantages,” Dr. Amy Taylor shared in a previous PhenoTips Speaker Series webinar, “and the advantages are mostly in time-saving. Time-saving either trying to find the pedigree, the notes, which may not be where they’re supposed to be. Time-saving where patients can enter their own information prior to clinic. Approach it as a business case, sell the benefits of it.”

Luckily, digital champions do not have to carry the load alone.

“Ask for help in building a business case. We can help support building that out,” Erica suggests, recognizing how busy genetic counselors are already.

Specifically, Erica says, “Think about your everyday work and what currently interferes with it. Presenting those scenarios as a business case, even if they’re just an anecdote or a story, those speak very loudly.”

“Build up support within your department, talk to your colleagues, see what their ideas are and what struggles they contend with,” Erica continues. “And then consider other departments that may be able to use that tool as well. That can help you in building that business case because maybe you can split the cost, or maybe you can collaborate on a grant application together and that helps in building a more compelling case.”

With funding and departmental support secured the next step is adoption, where digital champions may be challenged by change-resistant attitudes.

“A lot of people are afraid of change,” says Dr. Taylor. “I think that fear of change does have to be overcome and I think it’s a case of introducing ideas quite slowly because people sometimes need time to adapt to a big shift like that. Don’t be disheartened if you get a ‘but this, but that’ response, that’s somebody thinking it through. Give them time, and just keep gently coming back to it.”

Erica recommends leading by example, “I think just keeping open lines of communication with people that you typically collaborate with, just letting them know about projects you’re working on and how you’re using the digital tool helps them visualize how it could fit into their work as well.”

“Think about your everyday work and what currently interferes with it. Presenting those scenarios as a business case, even if they’re just an anecdote or a story, those speak very loudly.”

Before funding and departmental adoption, however, the first step is curiosity. If you, like many genetic counselors who have assumed the role of digital champion, find yourself curious about harnessing digital tools in your practice, you’ve already taken the first step toward leading your clinic into the 21st century.

As Erica points out, it’s nice to know what’s out there even if you’re not ready to fully adopt a digital tool.

“Explore your options, see what tools are available,” she says. “When you’re at conferences, visit the exhibit hall and see what’s out there. Do your own searches online. And don’t hesitate to request a demo or ask questions and learn what digital tools are all about.”