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(Summer Lee ***) In the Oregon Genetics Program we strive to improve the health of all
Oregonians and their families.
We support evidence-based use of genetic and genomic applications and our
mission is to promote the health, well-being, and quality of life for
our population using
genomic interventions and the public health model.
Next slide, please.
One of our overarching goals is to safeguard the public from detrimental use of genomic
information, while promoting applications where there is clear benefit.
To do this, we use a three-pronged approach of surveillance, education,
and policy.
Our program collects population
data that allows us to identify current gaps in knowledge and services
and opportunities for change.
This information helps us develop our strategies
and create buy-in when we educate stakeholders about prevention, early
identification, screening,
treatment options, and referral for genetic services, which include genetic
counseling and genetic testing.
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Having a BRCA mutation will greatly increase an individual's risk of developing breast,
ovarian, and other BRCA-related cancers.
Using genetic screening applications, such as
the ones that Dr. Khoury mentioned during his talk,
will save lives.
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In Oregon, we have almost three million adults, both males and females,
in the population.
We estimate that about 20,500 Oregonians are BRCA carriers
and approximately 154,000
appropriate candidates will need to be tested in order to identify these
carriers.
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In 2008,
840 Oregonians received genetic testing
for BRCA gene mutations by Myriad,
the only company in the U.S. that conducts this clinical test.
In the middle bar, we see that less than
half the BRCA tests were conducted in a facility where a
trained genetic specialist
was located.
This may cause variation in the quality of genetic counseling and the decision-making
process of the patient before and after testing.
If we look at the third bar, we can see that
the Medicaid population makes up just a fraction of those tested and highlights a
large disparity.
So, these multiple data sources tell us
that we have a huge opportunity for screening through the use of genetic services
and that some populations are currently experiencing noteworthy disparity.
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While our work largely addresses access to genetic services,
it's important to note that cancer prevention, detection, and treatment
involve multiple approaches
that require a broad network of providers, agencies, and partners working
together.
I included just a few of our partners in this diagram
to show how collaborations can affect one focus area
or span into two or more areas.
Our outreach into the Ashkenazi Jewish community, for example, allowed us to
conduct educational activities within a targeted community, while
our collaborations with Oregon Medicaid ultimately led to activities
in all three of our focus areas.
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Surveillance is the foundation of our program. We have many data sources,
including those listed here.
Our program acts as a clearinghouse. After we gather the data from multiple sources,
we analyze what each says to build a fuller picture of the situation
and identify gaps in knowledge and services.
Through this, we're able to use our data to
directly support our policy and educational activities.
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We have three main educational goals and
we tailor our messages to fit with the different populations we work with.
Here, I'd like to focus on our recent work with the local Ashkenazi Jewish
population.
Last spring, we conducted an Ashkenazi Jewish BRCA awareness
campaign,
which included a four-hour training session with our staff,
a local cancer geneticist, and a
dozen Jewish women to increase their knowledge of
BRCA mutations.
We presented information about BRCA mutations and the implication for the
Jewish community,
given their increased risk of having a deleterious mutation due to ancestry.
We reviewed the information packet we provided
and engaged in a personal discussion of the impact of their experiences,
shared stories, and gauged knowledge.
Since then, attendees have formed their own workgroups to continue communications
about BRCA
throughout the Jewish community.
We also work with primary care providers, obgyns, cancer specialists, and other
healthcare providers
to support them
in making appropriate referrals to genetics services.
In 2010,
we surveyed the top Oregon health insurance companies,
private, public, and self-insured,
and found inconsistencies in their policies for covering counseling, testing, and
follow-up care. In the near future,
we will be working more closely with health insurance companies in Oregon to ensure that
Oregonians have consistent and quality care that they can depend on.
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We support the use of evidence-based recommendations, the appropriate use of
genetic services, and the licensure
genetic counselors.
In 2011,
we worked with Oregon's Medicaid program and Medicaid in Oregon now covers
BRCA genetic services
for those with and without cancer, matching current evidence-based guidelines.
We will study future Medicaid data
to monitor the number of BRCA tests paid for
and how quickly the socio-economic barrier to appropriate services
may change.
We will also be promoting the use of evidence-based guidelines, such as
the National Comprehensive Cancer Network guidelines
and the USPSTF
recommendations, in our conversations with
leading Oregon health insurance companies and healthcare providers.
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From these projects,
we have learned that what gets measured gets done.
Callculate your baseline data and use it to focus your activities.
We use Healthy People 2020
targets when available to reassess our data over time.
This helps identify gaps and unmet needs, as well.
Multiple data sources are needed.
Decisions are only as good as the data they're based on.
Data from multiple sources can give you a more accurate understanding of the
situation. For example, we used the data from the Oregon State Cancer Registry, Oregon Census, and the literature
to estimate the incidence and prevalence of
BRCA mutations in Oregon,
as well as the number of adult Oregonians who may benefit from genetic services.
Multiple partners are needed, as well.
From funding to creative thinking,
including a diverse
set of partners will help with limited resources.
In addition,
multiple and comprehensive approaches will get the job done.
Solutions that are multi-pronged
will more fully address the issues at hand.
We work with patients, providers, and health insurance companies to promote the
use of evidence-based guidelines
in referring for genetic services. Next slide, please.
We will be working with the Oregon State Cancer Registry to send educational letters to cancer
patients
who may have a BRCA mutation and
we will be sending these educational letters to the
doctors simultaneously.
We hope that this will increase the likelihood
of genetic services being discussed during the next patient visit
and provide them contacts for the disussion of referral.
We will also discuss the tier one evidence-based genomic applications with health
insurance companies.
We will be sharing cost-effectiveness studies and emphasizing the potential
for client support.
We will also continue collaborating with our many partners in the field of cancer,
including the Oregon Partnership for Cancer Control, the Oregon
Comprehensive Cancer Control Plan, the Breast and Cervical Cancer Program, the
Oregon Cancer Registry, and many others.
As I stated before, while our work focuses on increasing appropriate referral for genetic
services,
it's important to note that cancer prevention, detection, and treatment involves
multiple approaches, including genetic services, and all approaches
require a broad network of providers, agencies, and partners.
Next slide.
Thank you so much for listening. Please feel free to contact any of us if you have
questions about this presentation
or our program.