A Village Sets the Stage
Behind the scenes, a team of health care professionals and patient advocates has been involved in developing clinical care pathways aimed at making the process safe and easier for providers and patients. Key participants in the group leading the effort
included primary care and specialist physicians and administrators from UVM Medical Center and a group of patient and family advisors. The team also includes Timothy Lahey, M.D., professor of medicine at the Larner College of Medicine and director
of clinical ethics at UVM Medical Center.
The care pathways provide common language for every aspect of the experience, from obtaining informed consent to guiding patients on next steps, such as which specialist a patient should be referred
to and what kind of further testing the patient might need before seeing the specialist. “We’re learning a lot about genes as we get more information,” says Christine Giummo, a genetic counselor involved with the program. “It’s
important for the family medicine doctors counseling these patients to have the information they need about further specialty care and testing so that they can advise accordingly. We have created the Genomic Medicine Resource Center to answer questions
and provide resources for providers and patients.”
Giummo notes that the care pathways’ work is an evolving process: the team continues to adjust the pathways as patients and providers report on their experience, and as clinical
evidence in the medical literature advances.
Striking the right ethical balance has also been a key focus. Ethical guidelines have helped shape the informed consent, to ensure that patients have a clear understanding of what the program
offers, what the results can mean—and what kind of control they have over their information. Further, says Lahey, the ethical implications of knowing what your future holds have influenced the architecture of the pilot project. “We’ve
been very careful. We don’t want to give scattershot information that might lead to increased anxiety and unnecessary testing that ultimately isn’t helpful. We want to offer information that is clearly connected to evidence-based pathways
Community members who bring the patient and family voice to health care have played a role in ensuring that all the infor- mational materials are understandable for patients and their families. Says Patient and Family Advisor
Brian Harwood, “We worked hard to make sure the words used matched the intent of the program, and were understandable for patients,” he says. “There was a lot of merging ideas and compromising.”
Leonard feels strongly
that this collaborative approach will help ensure the program’s success. “Our overarching goal is to do no harm. We always want to make sure our processes are safe and effective - and that patients have control over the use of their personal
Lahey is encouraged by the careful, toe-in-the-water way the Genomic Medicine Program is wading into this work. “The focus is pragmatic, the goal is to be evidence-based, and the aim is to use genetic information
The Genome and Vermont's Healthcare Landscape
If a patient who has no signs or symptoms learns they have a genetic difference that indicates the potential for lurking heart disease, the physician would order an echocardiogram. It’s likely that this test wouldn’t have been ordered in patients
without recognized symptoms. How will these cause-and-effect ramifications of genetic testing impact our statewide efforts to reduce the overall cost of health care? How will we prove, in the long run, that genetic testing helps prevent future disease
when incorporated into clinical care?
OneCare Vermont, Vermont’s Accountable Care Organization (ACO), is well-positioned to view the results of genetic testing through the lens of cost effectiveness across the population. OneCare
has already made a very significant contribution to the genetic testing currently being offered in primary care. Because an ACO can waive federal laws preventing health care organizations from offering innovative services for free, OneCare Vermont
has given the program such a waiver so the genetic testing offered in this pilot is available to patients for free. This is a key factor in avoiding the bias associated with expensive procedures that can only be accessed by those who can afford them.
Norman Ward, M.D., associate professor of family medicine and chief medical officer, OneCare Vermont, says he’s proud of the work that’s been done thus far. “This is one of the first examples of an ACO and a statewide
group of stakeholders wrestling with an issue of this scope and complexity. While there are certainly plenty of questions out there for the future, for now I think it is safe to say that the Vermont payment model and our ACO structure makes us uniquely
positioned to assess the value of genetics in routine medical care.”
Power and Promise of the Unknown
The potential for genetic testing stretches far out on the horizon, marked with immense potential—and unanswered questions. Genome sequences and heath information about individuals could contribute significantly to scientific research, helping us
understand how DNA differences are connected to our health But hanging over all this is the as-yet unknowns. How do we manage this technology so that people who learn about their genetic blueprint get information that is truly useful to them? How
can we prevent anxiety and needless further testing? How can we manage the cost implications?
In an ideal scenario, genetic testing would give patients and providers more information about their health and health risks. Timing of interventions
could come before the onset of clinical disease. The number and types of tests could be tailored to the patient, using the test results as a guide. Patients and providers would have clear paths for making effective use of the information they learn
from testing. Ultimately, genetic testing could lead to better care at equal or lower cost.
“This is an area of information impacting our health that we’ve never consistently integrated into health care,” says Wildin.
“Understanding how our genes impact health care is another tool in the tool box for providers and patients who can use it to make decisions about their care.”
Written by Eleanor Osborne, UVM Health Network.
Photography by Andy Duback