* need to educate patients and PCPs about new tests
   - awareness that test exists
   - interpreting results
   - implications for treatment and
     lifestyle
  And ideally all BEFORE test is given

* how to help patients have the confidence to forego agressive treatments (e.g. Chemo) when a test. Implies that they are unlikely to be beneficial?

* focus on tests for more deterministic, validated biomarkers now then move to less deterministic genetic predisposition later

* focus on tests that are most "actionable" where the course of treatment is immediately impacted

Table 15 focused on Comparative Effectiveness Research (CER)

 CER is not new; the quest today is how to do it “better” and include:

Randomized clinical trials AND less expensive inputs (observational studies, MBA cost-benefit)

Multiple views: physicians, hospitals, payers, patients, labs, corporate innovators

Multiple outcomes, costs

How can CER address multiple parameters & interest groups  and most of IOMA’s 100 priorities?

NIH issues call for proposals and selects best proposals, not a priori specific areas to study

Enabling legislation says, “CER cannot inform payment in any way” BUT our table agreed IT SHOULD 

How can NIH, AHRQ, IOMA etc accommodate pressures so many interest groups?

Our system does a pretty good job considering the many views it must accommodate

Perhaps there is a way to elevate the debate, select & disseminate best opposing views rather than spend the time to reach consensus in every case

CER must integrate PM more broadly YET faces challenge to recruit enough patients for subtype analysis

80% of HC spending is on 5 preventable diseases – provide incentives for consumers to lead healthier lives? 

#1 Recommendation:  Education

Require passing “health literacy” exam for hs, college diplomas

Include PM in residency training and board exams

As Raju mentioned in the previous entry, one goal of personalized medicine is to help minimize our country’s skyrocketing healthcare costs. Although this will be accomplished, in part, by using genetic information to improve a physician's ability to deliver targeted treatments to patients, another key component to this financial equation will be the education of insurance companies on how best to use personalized genetic medicine.

To highlight this point, take the case of a family who tragically lost a father from sudden cardiac death due to hypertrophic cardiomyopathy. Since HCM is one of the most commonly inherited cardiovascular diseases, the father’s close relatives, including his young son and daughter, are considered at risk for having inherited the disease. It’s important for the family to understand exactly what mechanisms contributed to the father’s death because this can help guide future healthcare decisions for his little boy and girl.

Although pricey at roughly $3000, tests for most of the genes known to cause HCM exist and insurance companies have demonstrated they will pay to have their patients tested. The standard procedure is to test the proband - or known affected family member - first, then if a genetic mutation is identified, all remaining family members can be tested for the known mutation at a fraction of the cost. In this scenario, the cost to test our father and his two children would be about $3500.

The problem is that the father in our scenario is dead and therefore no longer a patient of his insurance company. What happens now? Well, surprisingly, the insurance company pays a total of $6000 to have both the boy and girl tested for HCM. Let’s say the boy, but not the girl, is found to be positive for a mutation. Without knowing if the father carried this mutation and passed it on to his son, it can be challenging to interpret the significance of the mutation, and even more difficult to predict how this will affect the little boy’s health.

This is a simplified, yet real example of how insurance companies, if not properly educated, can contribute to the increasing cost of healthcare. To help solve this problem, physicians, geneticists, genetic counselors, and the insurance companies need to get together to discuss the most appropriate ways to obtain clinically relevant genetic information. Although this will be an ever evolving and ongoing conversation, patients, and the healthcare industry as a whole will most certainly benefit from these educational collaborations.