At the Institute for Genomics Education, Workforce, & Leadership, our goal is to ensure everyone benefits from genomics with dreams of a scalable precision healthcare system. Our Path to Precision Health virtual seminar series, which wrapped up in January, sought to discover the readiness of the global health ecosystem to make precision health a reality. And, if we are not ready, uncover some of the next steps to find a path toward universal accessibility. In dedication to this vision and to the people it will serve, I’d like to share three key insights from these seminars.
The three I’s to transform precision health became clear as the seminars unfolded. We must do the following in order to scale the delivery of precision medicine:
- Increase patient access— especially in underserved communities
- Implement precision medicine standards of care, and
- Integrate genomics and other -omics education into healthcare workforce training and tools, at the point of care
1. We must increase underserved populations’ access to precision medicine.
Increasing access starts with awareness. Many patients don’t know that precision medicine is an option available to them. For example, Eric Dishman, our moderator of parts two and three of this series and external advisory committee member, shared that he only received life-saving personalized treatment because of friends and colleagues within the field who provided a path. Our series emphasized the importance of bridging these gaps and creating what Mr. Dishman imagines being a careforce that centers on the patients themselves, which he discussed in the second part of this series, “More Than Access: What Patients Want from Precision Oncology.”
Our panelists modeled such careforces to the greatest extent by using their knowledge and experiences to help underserved populations receive practical education about care options. For example, inspired by her experience realizing that only 3% of Black women get access to clinical trials, Laura Crandon, panelist in the second part of the series, discussed her founding of Touch4Life, a 501(c)(3) nonprofit organization working to eliminate cancer outcome disparities for BIPOC and under-resourced communities. Ms. Crandon’s work involves building care networks and talking with numerous groups of physicians and researchers who help serve under-resourced communities. In that way, we can see how working through the careforce can empower patients with knowledge about their options and help them take control of their journey. This is a real path forward to realize better access and outcomes.
Focusing on patients first and foremost aligns with other takeaways from this series, including the reality that guidelines (if they even exist) aren’t being applied at the point of care everywhere. We need to revisit the systems we have in place, especially in community health settings, and see how workflows can be reimagined to center on patient awareness, access and utilization of precision medicine.
We need to revisit the systems we have in place, especially in community health settings, and see how workflows can be reimagined to center on patient awareness, access and utilization of precision medicine.
Ms. Crandon’s fellow panelist, Dr. Catalina Lopez-Correa, discussed how even if precision medicine is considered the quality standard of care, underserved communities often aren’t getting that care.
While we are addressing these barriers to awareness and access, we must also extend our focus to the second takeaway from this series: the need to implement new standards that incorporate precision medicine.
2. We must reinvigorate, reinvest, and recreate care models and standards to include precision medicine.
In the first installment of the virtual seminar series, “Building Resilience: Insights from the Genomics Workforce,” panelist Kristen Mahoney Shannon emphasized the importance of expanding the primary care team in the implementation of precision medicine:
“Genetic counselors need to be on the front lines in the primary care setting. Supporting those patients but, more importantly, supporting the physicians who are dealing with all this information.”
In whole-hearted agreement with this approach, Dr. Pamela Ganschow in part three entitled, “The Primary Dilemma: How to Bring Precision Health to Primary Care,” further emphasized why we need to integrate the genetic counseling workforce into primary care settings and in a fashion similar to how other allied health professions have joined this care team. She shared the unique role that genetic counselors will continue to play, especially in providing post-test disclosure of positive genetic test results.
To make this precision care team model a reality, however, the panelists emphasized that professional societies need to come together to develop more guidance for primary care physicians with respect to the scope of practice and expected standard of care for genetics, genomics, and precision medicine. Dr. Ganshow proposed that guidelines aren’t enough, and now we need to create sources of accountability to integrate genetic counselors in the primary care space. Mandating this within measures, such as Healthcare Effectiveness Data and Information Set (HEDISⓇ ) or clinical quality measures from the Uniform Data System (UDS), will serve to move this integration up on the priority list. Amazingly, Dr. Ganschow shared that her institution was able to, in one year, define the process to complete universal cancer risk assessments for everyone utilizing existing staff. This occurred only after an update to the National Accreditation Program for Breast Centers (NAPBC) standards supported this change. Dr. Ganschow shared,
“I’ve been trying to push this in primary care for three years, and in less than one year, mammography has done it based on an accountability standard.”
Dr. Mylynda B. Massart, fellow panelist, also made the point that we may need a formal society for practitioners of precision medicine. Our panelists and others are doing crucial work. Still, they desperately need more support from national professional societies to make precision medicine practices the standard of care. Although there are currently very few societies with guidelines, such guidelines from these organizations are key to incentivizing health systems to fill these gaps and reach more patients.
Looking at where the panelists have found concrete success, solutions that are easily adoptable and alleviate physicians’ burdens— that also fit within the fifteen-minute window allocated for seeing a patient— are crucial. Dr. Massart made two salient points I want to highlight. She reiterated,
"Asking the workforce to take on one more whole scope of work, one more whole scope of knowledge isn’t the solution. Education is important, and some fundamental baseline knowledge is critical, but really, it will be about systems.”
This takes us toward the last key: the right tools and training are essential to offer providers needed help to incorporate the latest guidelines and innovations into patient care.
3. We must help providers stay current on precision medicine care standards through novel training and the use of technology, integrated at the point of care.
Gillian Hooker, the moderator of part one and external advisory committee member, discussed the focus group that was our inspiration for this series. The results of this focus group, which consisted of the largest genomics careforce— genetic counselors— reveal that this workforce eagerly seeks greater education opportunities, yet require increased support in their workplaces to integrate genomics across the health system. It seems only fitting, then, that the need for increased education, tools, and point of care solutions came up as a key theme throughout the whole seminar series. When I write education, I don’t only mean in the normative classroom sense. Instead, I mean education as access to the latest information, integrated into the systems that real healthcare workforces utilize when caring for patients.
Our panelists in part one did not support a total overhaul of genetic counselors’ graduate education. Aishwarya Arjunan explained she doesn’t believe genetic counselors need additional training programs or degrees to do what they’re doing. However, Ms. Arjunan emphasized a need for genetic counselors to seek training that helps them evolve in preparation for what’s to come. But what could that look like? Well, Ms. Arjunan mentioned more learnings about the business of healthcare, which she felt was missing from her education, and a change in competencies and how training is done, some of which patients’ needs should direct.
Fellow panelist, Claire Davis, echoed these sentiments about looking to what and who we already have. Ms. Davis explained that the opportunities she finds generative are those that reinforce and support the existing people who are doing this work. Working to support and invest in the healthcare workforce, still coming back from the trauma and burnt-out feelings lingering from the pandemic, seems astute to me. Especially if we are able to use this disruption as an inflection point to enact greater change.
But how do providers who want to integrate precision medicine at the point of care adapt to the unprecedented pace of innovation? In the third part of this series, Mr. Dishman reflected that the goal needs to be leveling up everyone’s basic knowledge. This can be with the help of technologies, such as artificial intelligence (AI) and clinical decision support (CDS) systems. We can envision a world where the electronic health record (EHR) updates automatically with the latest advances in science and guidelines, so providers can focus on the patient, translating this information into personalized actions at the bedside. Kunal Sanghavi, a panelist in part three, agreed that new AI and CDS capabilities can play a big role in this, but cautioned that the systems need to communicate with each other. There are currently too many data silos, preventing the effective utilization of health data and insights at the point of care.
We can envision a world where the electronic health record (EHR) updates automatically with the latest advances in science and guidelines, so providers can focus on the patient, translating this information into personalized actions at the bedside.
In the final minutes of the seminar series, Mr. Dishman gave hope in sharing that there are industries and examples within healthcare where we’ve created systems level change before. However, he reminded us all just what is at stake if we do not speed up the implementation of precision medicine tests, treatments, and tools:
We can’t take 20 years for them to be implemented at scale. It’s just going to kill patients, and it will cost a fortune.
This virtual seminar series has emphasized the axles that need refiguring and the bumps in the road we need to smooth out on the path to precision health. Our team at the Institute is eager to help carve the road to implementation by continuing these discussions and pursuing research and collaborations that bring about a scalable precision healthcare system. Please join us by signing up for our contact list and following us on LinkedIn and receive the latest information on how you can engage and contribute in these continued efforts.
- Kelly Athman - Director of Thought Leadership at the Institute for Genomics Education, Workforce & Leadership
Special Note: A big thank you to our amazing panelists and moderators from the genomics ecosystem who opened up and shared their insights and experiences during the Path to Precision Health series. Your honest insights help us see where healthcare can get better.