The Value of Genetic Counselors: How to Collect Cost Effectiveness Data and Improve Access to Care

Webinar Objectives The Value of Genetic Counselors: How to Collect Cost Effectiveness Data and Improve Access to Care Amber Trivedi, MS, CGC , Inform...
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Webinar Objectives

The Value of Genetic Counselors: How to Collect Cost Effectiveness Data and Improve Access to Care Amber Trivedi, MS, CGC , InformedDNA


Determine methods to facilitate increased access to quality genetic counseling services. 2. Develop capacity of individuals to perform research pertaining to cost effectiveness, cost savings, and value with regard to the genetic counseling profession. 3. Awareness of past and current research regarding value of the genetic counseling profession.

Christine Miller, MS, LCGC, ARUP Laboratories Deborah Wham, MS, CGC, Aurora Advanced Healthcare Joy Larsen Haidle, MS, CGC, Humphrey Cancer Center John Richardson, NSGC Government Relations Director

Amber Trivedi, MS, CGC

We encourage questions to be asked throughout the presentation. *Please use your “chat feature” to send in any questions to presenters. If you have trouble using the chat feature, please feel free to email your question in to [email protected]

Christine Miller, MS, LCGC  Christine Miller has worked as a genetic consultant at ARUP Laboratories in molecular genetics for the past 11 years functioning as a liaison between the laboratory and health care providers. She is the course master for the Genetic Counseling Laboratory Rotation for the University of Utah Graduate Program in Genetic Counseling and is a member of the Research Oversight Committee. Christine received her BS in Biology from James Madison University and MS in Genetic Counseling from the University of South Carolina. She spearheaded the successful effort for genetic counselor licensure in the state of Utah in 2000. Previously Chris was employed as a perinatal genetic counselor in both a HMO and University setting for 13 years.

Amber Trivedi is the Senior Vice President, Provider & Client Services at InformedDNA, a nationwide network of board-certified genetic counselors that offers services via telephone or web. Amber received a Bachelor of Arts in Behavioral Biology from the Johns Hopkins University, and she earned her Master of Science in Genetic Counseling from Northwestern University. Amber's clinical background is in cancer and prenatal genetics. She joined InformedDNA to support the organization’s mission of increasing access to qualified genetics experts, and she works with health plans and hospital systems to incorporate genetic counseling within their networks. Amber serves on the NSGC Payer Task Force to support billing and reimbursement initiatives. She also has a special interest in the unique needs of young women at high risk for breast and ovarian cancer, and serves on the Expert Panel of the non-profit support organization Bright Pink.

Deborah Wham, MS, CGC Deborah Wham is the manager of the Genomic Medicine Program at Aurora Health Care. She graduated from the University of Wisconsin with degrees in psychology and Spanish. She earned her masters degree in genetic counseling from Northwestern University. In 2002, she joined Aurora Health Care as a cancer and prenatal genetic counselor and earned certification through the ABGC. Since then she has helped build a genetic counseling program that includes 6 more genetic counselors with services in 18 prenatal and cancer clinics. In 2007, she completed the leadership training through the Aurora Leadership Academy (class 8). Deb is currently responsible for strategic planning and implementation of genetics services at Aurora Health Care. She served as a director-at-large for the National Society of Genetic Counselors from 2008-2010. She currently sits on the Genetics Advisory Board for the state of Wisconsin and is part of the Wisconsin Cancer Risk Program Network (WiCRPN), as well as the Wisconsin working group on state licensure for genetic counselors. In 2010, Deb authored the paper “Assessment of Clinical Practices Among Cancer Genetic Counselors” (Familial Cancer, Vol 9 No 3), which was the first direct evaluation of its kind. She is currently the Cancer SIG liaison to the payor task force working group gathering evidence to further the federal legislation to amend the Medicare act to recognize genetic counselors as providers.


Joy Larsen Haidle, MS, CGC

John Richardson, NSGC Government Relations Director  John has over 15 years experience in the public policy arena and has served as the NSGC lobbyist for the last 4 years. He has been instrumental with state licensure efforts as he guided the development of our guiding principles and model legislative language. Working with many volunteer leaders, he has created justification for these efforts and develops unique strategies for our members in each state. John has also done considerable work around billing and reimbursement and engages payers around coverage and credentialing policies. He is currently preparing for the effort to introduce federal legislation that will allow genetic counselor recognition under Medicare. John previously worked on Capitol Hill for 5 years as a legislative aide and also gained extensive political experience working on presidential and congressional campaigns.

 Joy Larsen Haidle, MS, CGC is a genetic counselor at the Humphrey Cancer Center in Robbinsdale, MN. She is also a Policy and Peer Review consultant for Blue Cross Blue Shield of Minnesota and an expert resource for other Minnesota Payers. Joy is a Clinical Preceptor in the Genetic, Cell Biology, and Development Department at the University of Minnesota. Joy has held several leadership positions in NSGC and previously served on the Board of Directors as a Director-at-Large. She is the recipient of the Outstanding Volunteer Award in 2012.

Physicians Want Help

Demonstrating the Value of Genetic Counselors

72% non-genetics MDs rate their knowledge of genetics as fair to poor

90% feel genetics is important to their practice; only 25% comfortable ordering or interpreting tests

Only 19% of physicians ordering common genetic tests correctly interpret patient family history/risks

Amber Trivedi MS, CGC Sr VP, Provider & Client Services InformedDNA

Physicians Lack Confidence with Molecular Diagnostic Tests Physicians

I am confident I can… Explain test results to my patients


Identify appropriate patients for testing


Understand and interpret the rest results


Choose the right test


Choose which lab to send tests to


Determine if the test is covered by insurance


Determine the right insurance codes


InformedDNA Founded to Increase Access to Genetics Experts • • • • • • •

Largest independent genetic counseling provider network Deliver services via telephone or videoconference 40+ board-certified genetic counselors Most specialties/subspecialties Rigorously follow national guidelines and standards 60 million (+) lives under contract In-network with Aetna, Cigna, United Healthcare and many regional health plans

Data source: Jerry Coamey, CAHG Landmark Physician Study 2011


Cancer Family History 1

The Priority Health Experience

• Provider requested comprehensive BRCA testing for unaffected member (>$3000)

 Policy developed to ensure appropriate use of genetic testing services; both over and underutilization  Coverage for certain tests requires genetic counseling by a trained genetics professional  Telephone GC access needed to enforce requirement  Allowed comparison of TRFs submitted by non-geneticists to genetic counselor assessments

• Sister reported is actually a half-sister, and aunt reported is actually a first cousin once removed • Half-sister already tested neg for BRCA mutations, eliminating clinical utility of BRCA testing in member

Cancer Family History 3

Cancer Family History 2

• Patient reported strong family history of uterine cancer

• Fam hx combined from both sides to make member meet criteria, but appropriate to use maternal or paternal side only

• Benign pathology discovered upon further review

• Even if member met criteria, costly dx colon gene testing not recommended as first step in evaluation

• This substantially changes the risk estimate and appropriateness for genetic testing

• Member is a candidate for BRCA testing, which was not considered

BRCA Pre-Testing GC Improves Outcomes AND Reduces Spending Reduction in requests based on policy implementation

BRCA Test Management

20% - 30% 1

Inappropriate requests with policy implemented but genetic counseling not required

24% 2

Inappropriate Initially seemed appropriate based on documentation from ordering provider, but deemed inappropriate by clinical genetic counseling (threegeneration pedigree, risk models, etc)

Overall % Estimated Savings 1. 2. 3. 4.

United Healthcare, Dr. Lee Newcomer, Senior Vice President, Oncology -- Fall 2010, Biotechnology Healthcare magazine Aetna, Inc., Dr. Joanne Armstrong, National Medical Director for Women’s Health, 2010 Data from Priority Health immediately following the health plan’s adoption of medical policies requiring genetic counseling Informed Medical Decisions, Inc, 2010, data analysis and conclusions; includes consideration of both genetic counseling and testing costs

25% - 33% 3

52% 4 Example: For 10,000 members who appeared to meet criteria for BRCA genetic testing based on TRF/Prior Auth -requiring independent genetic counseling reduces test costs by $10,020,000.00. Approx. Genetic Counseling Cost = $2,800,000

Policy/prior auth

DTC campaigns

GC required

Total savings = $7,220,000 © 2012, Informed Medical Decisions, Inc. © 2012, Informed Medical Decisions, Inc.


Connect With Your Referring Providers and Demonstrate Your Value  Offer to help them improve patient care and reduce their liability

Genetic Counselors: Ideal Professionals to Review Genetic Test Orders

> Chart review to identify patients who meet criteria for genetics evaluation; set up an identification and referral process > Education - guidelines pertaining to genetics, emerging technology


Suggest collaboration with physicians who order tests on their own Collect data and present/publish Use the NSGC self-marketing toolkit Keep a positive attitude! Focus on:

Christine Miller, MS, LCGC ARUP Laboratories

> Enhancing patient care > Supporting providers to reduce their burden

NSGC 2006 Scope of Practice  Item 7 ….Order tests and perform clinical assessments in accordance with local state and federal regulations.  Most genetic tests ordered by HCPs with little formal education in genetics.

2009 CDC Report  Published recommendations for best practices in genetic testing  More errors occur in pre and post analytic phase than in the analytic process itself  Labs should: > Help HCPs with appropriate test selection > Collect patient information for proper testing and interpretation

Test Order Review at ARUP Labs  All molecular sequencing and deletion/duplication tests  All prenatal genomic microarray tests  Selected biochemical assays

Misorders Comprise ~30% of Complex Genetic Test Orders     

37% 31% 11% 10% 10%

Cancelled Cancelled Cancelled Cancelled Cancelled

incorrect test ordered correct one incorrect test but could not order correct one gene sequencing & added targeted panel sequencing & ordered familial mutation duplicate test order


Top Tests Cancelled Health Care Savings

 Cystic Fibrosis Sequencing  Alpha Globin Sequencing

 Over $50,000 a month  Greater than one half million dollars annually

 Galactose-1-Phosphate Uridyl Transferase  Lynch Syndrome Mismatch Repair Genes  Targeted Sequencing for Familial Mutations

Performing Test Order Reviews

Helpful Information to Request

 Must have clinical history to understand why test was ordered  Most labs performing genetic tests request clinical hx on test requisitions or consent forms  ARUP created custom patient history forms for each test


Ordering HCP, phone number and practice type Patient symptoms Supporting laboratory results Family history Previous results of affected family members Test practitioner intended to order


Ex. Lynch Syndrome MSH2 Sequencing and Deletion/Duplication Ordered      

No info provided with order Contact ordering HCP Learn that pt has an affected brother Ask HCP to call pt and see if he can get records of brother’s test result Learn that brother has MSH6 c.242G>A Change test to targeted sequencing for MSH6

Example 2; CFTR Sequencing     

26 year old female No clinical info provided Ordering health care provider- OB/GYN Call HCP to document reason for testing Cancel sequencing and order routine CF panel

Example 3; FBN1 Sequencing

Putting Test Review into Practice

1 year old asymptomatic male Primary care physician FOB has Marfan Sx but no molecular test confirmation of dx Not finding a pathogenic mutation would not rule out dx Extracted DNA and encouraged FOB to be referred to geneticist or at least undergo FBN1 testing first.  FOB tested negative for FBN1 seq and dd. Cancelled test on child.

 Laboratory GCs can create custom patient history forms  Lab extracts DNA on specific tests being held for review  GC reviews:


Test Review at Private and University Hospitals  Meet with pathology to investigate how send out process works  Offer your services for daily genetic test review before sending samples out  If patient history is not provided with test order, determine where sample is being sent and print off proper form and call HCP for info  Keep track of all tests canceled and new tests ordered  Demonstrate savings to the hospital to justify full or partial funding of your position

> Instructs lab to run as ordered > Cancels and reorders correct test

Summary  GCs are ideally trained to perform genetic test order reviews  Clinical information is critical  Reviewing genetic test orders results in significant cost-savings


Retrospective Analysis of the Value of Genetic Counselors Deborah Wham, MS, CGC Manager, Genomic Medicine Program Aurora Health Care, Milwaukee WI

Genetic Counselors Improve Outcomes for BRCA1/2 Positive Patients

Retrospective Analysis

 Question: Is there a way to access data to determine if patients who see a master’s prepared genetic counselor for cancer genetic counseling and testing have better outcomes than those who see a non-master’s prepared provider such as a physician.

 Step 1: Cancer Registry > Queried for patients who had BRCA testing from 2006-2010 > Data elements: — Demographics: age, what kind of cancer, race, clinic geography — Treating physicians — Genetic counselor involved in case

 Question: If so, what are the outcomes that we want to measure? > > > > > >

Better understanding of BRCA testing/genetics Psychosocial outcomes (decreased anxiety, etc) Increased screening? Reduced risk of cancer? Increased testing of family members of BRCA+ patients Decreased patient care costs?

 Step 2: EMR review > > > > > >

BRCA mutation status Who ordered BRCA test Family history documentation Documentation of risk to family members (duty to warn) Documentation of appropriate surveillance (per NCCN) Documentation of appropriate surgical/medical intervention (per NCCN)

Significant Results

Significant Results

 Patients seen by a genetic counselor were more likely to have a complete family history documented (p=0.023)  Patients seen by a genetic counselor were more likely to have the risk to family members documented (p=0.02)

 Patients who saw a genetic counselor were more likely to have appropriate breast and ovarian cancer risk management


> More likely to have prophylactic mastectomy or high risk breast screening (p=0.053) > More likely to pursue prophylactic oophorectomy or high risk ovarian surveillance (p=0.035)




60% No GC 50%

GC Total





0% Family history documented

Family risk discussed


Results That Weren’t Significant

Issues With This Study

 No difference in patient demographics

 Small N > 51 patients with known deleterious BRCA mutations — 39 counseled and tested by a GC — 12 ‘counseled’ and tested by a physician — Had to exclude patients with VUS or conflicting reports of results

 No difference in follow up based on year of testing (changes in NCCN guidelines)  No difference in outcomes based on clinic geography > Tertiary center vs. clinic > Urban vs. rural

 No difference in whether or not the genetic counseling/testing was done pre-operatively or post-operatively


Retrospective analysis Short term follow up Review of EMR done by genetic counselors – bias? No way to know if the significant differences are just due to lack of complete documentation

Things We Tried and Failed…

Now It’s Your Turn

 We attempted to look at other ‘outcomes’ such as:

 Keep it simple

> Whether a second genetic test was ordered (e.g. PTEN) and was it appropriate per NCCN > Did BRCA negative patients have appropriate follow up? — — — —

Mammogram schedule Ovarian surveillance Colonoscopy Were they then told of their residual cancer risks

 We tried to find a way to do the same analysis on patients without cancer, but they aren’t in the cancer registry which is easy to query  We wanted to determine if patients were appropriate for BRCA testing > Couldn’t always tell if it was single site, AJ panel, sequencing > Didn’t matter anyway, as we only got useful data from BRCA+, so clearly they were appropriate for testing

> We tried to look at all possible outcomes with both BRCA+ and BRCApatients, which wasted a lot of time. > We didn’t do any complicated statistics

 The hardest part was figuring out where the data was  If your cancer registry doesn’t track any genetic testing/counseling, some EMRs can also be queried using codes for orderables/ diagnoses or billing  Focus on outcomes as they relate to the genetic counselor rather than the genetic counseling process or the genetic test

Other Thoughts

Thank You and Contact Info

 A study like this may be significant in 2 ways:

Carrie Prochniak, MS, CGC – She did most of the work! Melissa Sopko, MS, CGC Amy Schoenebeck, MS, CGC Jenny Geurts, MS, CGC Andrea Guszkowski, MS, CGC Jessica Grzybowski, MS, CGC Ashley Wells, MS, CGC

> Internally: As more OB/gyns were ordering BRCA testing, we wanted evidence to back up our argument that the process of counseling, ordering genetic testing and following up is not as simple as it seems AND we do it better. > Externally: Licensure, federal legislation

 We are minimalist genetic counselors. Our patients all only had one visit with us and got their results over the phone, and they still had better outcomes than those tested by their oncology physicians who see them multiple times.

[email protected] or 414 649-5786

 This data is replicable!


Genetic Counselors are an important part of the healthcare team!

Help Keep the Momentum Going! Joy Larsen Haidle, MS, CGC Genetic Counselor Humphrey Cancer Center

So many questions…So little data. > Paucity of data about the value of the genetic counselor > Most data in literature on value of genetic test or genetic counseling

 Why are we uniquely qualified to provide these services compared to someone else?  How do we impact the outcome for the patient?  Do patients have a better understanding of their results?  Are they more apt to follow-up on surveillance?  Are patients more apt to share the information with their relatives?  How are genetic counselors saving costs to the healthcare system?  What is the magnitude of dollars saved by our involvement in the process?

How can you help?  Help gather data in 2013! > Evidence to support the notion that having the Genetic Counselor involved added value to the patient care — appropriate surveillance — better compliance — appropriate testing — greater satisfaction — better patient outcomes — amount of $$ saved by having a GC involved — Others?

> Multiple sub-specialties needed

 Student Thesis projects

Key Points

Thank you!!!

 NSGC has efforts at the national level, but it is still up to you to implement at the local level  Ideas presented here are reproducible locally


> Collect data at your institution > Helps at your institution level > Helps profession at national level too

 Let us know if you are planning to collect data > Payer Subcommittee has data requests and needs throughout the year — Helps us reach out to people quickly when the need arises

Amber Trivedi Chris Miller Deborah Wham John Richardson Webinar Committee

 Amy Sturm, Co-Chair Payer Subcommittee  Monica Marvin, Incoming Co-Chair Payer Subcommittee  Joy Larsen Haidle: 763-581-2923 or [email protected]


Questions? *Please use your “chat feature” to send in any questions to presenters. If you have trouble using the chat feature, please feel free to email your question in to [email protected]


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