Around 5% of breast cancer cases are attributable to rare, high-penetrance mutations of BRCA1 & 2, ATM, PTEN, TP53 and some others.

Testing for BRCA1 and BRCA2 gene mutations should be done in women with personal or family history features suggestive of genetic breast or ovarian cancer, if the woman decides that such knowledge will influence medical management decisions or other significant life choices.

The U.S Preventative Services Task Force (USPSTF) recognizes the following family history patterns of increase risk for BRCA1/BRCA2-associated breast cancer in  women who are not Ashkenazi Jewish women (see their specialized case below). Most commercial insurance companies will use this list or something similar to it as a basis for deciding coverage for BRCA testing for their subscribers.  In other words, if one of these statements describes you, BRCA testing would likely be covered by your insurance.  If none of these statements describes you, yet you still believe you may be at inordinate risk, you should sit down with a  professional who is knowledgeable on the topic.

- 2 first degree relatives with breast cancer, in one of whom the diagnosis was established at 50 years-old or younger.

- A combination of three or more first- or second-degree relatives with breast cancer regardless of age at diagnosis.

- A combination of breast and ovarian cancer among first- and second-degree relatives.

- A first-degree relative with bilateral breast cancer.

- A combination of two or more first- or second-degree relatives with ovarian cancer regardless of age at diagnosis.

- A first- or second-degree relative with both breast and ovarian cancer at any age.

- A history of breast cancer in a male relative.

If you are an Ashkenazi Jewish woman, the list simplifies to: any first-degree relative, or two second-degree relatives on the same side of the family, with breast or ovarian cancer.

Genetic counseling before and after genetic testing is highly recommended.

Legal discrimination against you in life, disability, or long-term care insurance.  The Genetic Information Nondiscrimination Act (GINA) of 2008 is a well designed federal law that protects you from discrimination in health insurance and employment actions on the basis of your genetic information.  However, GINA does not apply to life, disability, or long-term care insurance.

Wasted money on poorly chosen genetic tests that have little clinical value compared to other purchases for a healthier lifestyle, like new bicycles and healthy family vacations.

Family stress from not having a pre-specified plan for sharing (non-sharing) your results with your blood relatives, since the information might affect their well-being and disease risk too.

Emotional (over)reactions to your test results. These include powerlessness, anxiety, depression, invincibility, and others.  Most stem from…

Misinterpretation of test results.  Almost all chronic disease results from complex and incompletely understood interactions between multiple genes and environment.  You need to investigate how clinically useful your genetic test results are given your other risk factors, and if the genetic test has a proven clinical track record or is “hot off the press”.

Rule of thumb: For a medical test to be a “good test”, it should be able to improve health and well-being compared to not having ordered the test in the first place – regardless of the test result!

It overlaps well with this month’s earlier Time Magazine piece about transparency problems in healthcare billing.

The greatest accomplishments in medicine are achieved through teamwork. Why then, is Wise Patient’s independence a core component of its mission to be the smartest and most compassionate primary care clinic in Seattle?

Independence, in this case, only refers to my not being influenced by the financial motivations of a large medical institution.  

I have nothing against large medical institutions. Most of my medical training has occurred within Stanford University Medical Center and the University of Washington Medical Center. Most of my career I have been employed by a large medical institution. The majority of the specialists I refer patients to are employed by one of Seattle’s large medical institutions. In short, I rely on large medical institutions most everyday for all sorts of teamwork.

Yet, being administratively independent from large medical institutions allows me more clarity of thought and transparency as a primary care physician:

• I feel no pressure to refer my patients to only one institution’s specialists.
• I feel no pressure to refer my patients to procedures and tests that reimburse the institution more favorably over others.
• My patients are never charged an extra “facility fee” for their visit to me.

So long as the IT that allows me to interact with my colleagues at each medical institution is robust – and it is – I believe that my independence at the primary care level can improve health outcomes, improve patient satisfaction, and cut healthcare costs.

Call it what you want: open notes, open access, patient-accessed, or patient-viewed. I am talking specifically about a patient’s ability to easily access and read the summary section of their medical note, widely referred to as the “Assessment and Plan”, or simply “A&P”. The A&P is a wrap-up summary of the medical encounter from the clinician’s perspective. It attempts to synthesize supporting data (the patient’s descriptions, medical history, physical exam findings, and medical tests) with medical knowledge to create the most cohesive medical conclusion possible and a medical roadmap for the patient to follow forward. How many of you, outside of my own patients, regularly read your doctor’s Assessment and Plan? My guess is 20%, tops, and that is the problem. The traditional audience for the A&P is anther physician – the same doctor next appointment, the sub-specialist, or the ER doctor on staff when the ambulance rolls up. But not you, the patient. You, traditionally, get a curtly-typed or even hand-written layman’s to-do list: start this medication, stop that one, go for chest x-ray, ice this, eat better, exercise more, etc. The greater details you are expected to remember from your conversation with your doctor or gleam from a one-size-fits-all educational handout published by a third-party.

My position is straightforward. I believe in open medical notes. I write each Assessment and Plan for two audiences: my patient and my patient’s doctors.

The medical literature that exists on this topic – not much – supports me. A groundbreaking study on open medical notes, funded by the Robert Wood Johnson Foundation, was published last year. In fact Harborview Medical Center here in Seattle was one of the 4 hospitals involved and two local physician researchers, Joann Elmore (UW) and James Ralston (Group Health) were among the authors. The results reflected well on open medical notes. Here is the first paragraph from the Discussion section of the publication:

Patients were enthusiastic about open access to PCP visit notes; 99% of those who completed surveys recommended that this transparency continue. Overall, a large majority opened some or all of their notes, and almost 90% believed that open notes would affect their decisions when seeking care in the future. The vast majority reported an increased sense of control, greater understanding of their medical issues, improved recall of their plans for care, and better preparation for future visits. Perhaps most important clinically, a remarkable number reported becoming more likely to take medications as prescribed. In contrast to the fears of many doctors, few patients reported being confused, worried, or offended by what they read.

Yet, according to an Accenture survey published this month, only 31% of U.S. doctors believed patients should have full access to their electronic health record and only 21% said they currently allow patients online access to their Assessment and Plan.

I am familiar with the assertions against open medical notes. Most relate to patients with anxiety or mental illness, patients who are litigious, or doctors lacking the time needed to strip the Assessment and Plan section of their note of medical jargon and abbreviations. These concerns are valid for a small portion of patients, though my general experience is that effective communication improves anxiety, correcting power imbalances lowers the risk of lawsuit, and patients over time are able to assimilate most medical jargon and abbreviations.

At Wise Patient, I have given all patients full online access to the Assessment and Plan portion of their medical note from every appointment, from day one. I have not been able to do that in my past work environments. The overall effect could not be clearer. My patients have felt welcome in the central command room of their medical strategy. The have gained medical knowledge and medical confidence.  Their sense of medical evidence is more balanced. They understand my thought processes better. They appreciate when their medical plan has been personalized to the values and preferences they bring to the table.  Some patients reference their Assessment and Plan multiple times between visits.

If you agree with me that the overall benefits of open medical notes outweigh overall risks of them, http://myopennotes.org is a solid resource for the cause.

Transparency in healthcare is the way forward. Open medical notes makes me a better doctor and my patients healthier people.

In 2012, I helped Dr. Warren with several aspects of starting Wise Patient Internal Medicine. One of my tasks was securing contracts with private insurers so you, his patient, could use your insurance to see him. I have had many jobs: EMT, teaching English as a second language to children, secretary, barista, programmer, file clerk, yoga teacher, project manager in a large company, parent to two small children who don’t get along well. So I was impressed (in a negative way) by how completely frustrating, agonizing, and tedious it was to do a task that should have been quite simple. I sent the following letter to the Insurance Commission, Mike Keidler. I know it’s a long post so you could skip to the paragraph that starts “I have many stories like the following” if you weren’t yet convinced that our insurance system is needlessly inefficient and incredibly unfriendly to its users.

Here is the letter:

I am the Project Manager for Dr. Sam Warren, MD and his private medical practice, Wise Patient Internal Medicine. I have assisted Dr. Warren with some of the tasks necessary to open his practice on Capitol Hill in Seattle. Before working in the health care field, I spent 6 years working at amazon.com as a web developer. Tasked with obtaining contracts between insurance companies and the new private practice, I was confounded by an incredibly inefficient and byzantine system created and maintained by the insurance companies. I feel compelled to share these challenges with you as they may have a relatively simple solution.

Whenever a health care provider is changing or adding an employer, even if s/he is already credentialed with the insurer, insurance companies require an update to the provider’s demographic information. *All* of the information each insurance company needs already exists (or can easily be entered) in Oneheathport.com — the central repository chosen by the state in 2009 to lead the health information exchange project mandated by the federal and Washington state government. However, insurers do not use onehealthport for this purpose. Instead, a provider’s representative must figure out each company’s tangled web of departments, fax numbers and contact names.

I spent 29 hours obtaining contracts from 9 insurers. Dr. Warren spent approximately $1000 on this process. In 2008, there were 954,000 physicians, 70,000 physician assistants, and 106,000 nurse practitioners practicing in the United States. Each time one of them changes employers, they have to go through this process at the expense of the hospital or physician who employs them. If only 5% of providers change jobs every year, the administrative cost is around $50,000,000. I realize in the big picture of health care dollars, this isn’t a great deal of money but the problem is low hanging fruit. The solution already exists in Washington state.

I have many stories like the following: In June, when I investigated what Regence requires from a provider to contract with them, I read they used onehealthport. I submitted all of Dr. Warren’s credentialing information to onehealthport and at the end of the process selected Regence, among others, to have access to this data. When I heard nothing for a few weeks, I called and was told I needed to submit a form via their website so they knew to look at onehealthport. I submitted the form but heard nothing. I called again 2 weeks later and spoke to a representative named Irene who told me I needed to send all the information via a fax. Because Regence had not processed the contract with Dr. Warren’s other employer (he also works for Northwest hospital), I could not proceed with the new contract. While Dr. Warren had signed the contract in April, no one at Regence knew where it was. I have a long email thread between Regence and Northwest Hospital with details. Finally, at the end of September Regence found the contract so I sent the fax with the new business data. When I called October 16, I was told I was not supposed to send a fax but fill out a form on the website THEN send additional information by fax (to review: all of this information is currently on onehealthport). When I stated I had already sent the information by fax, I was told it hadn’t been received. I have a summary from the fax machine stating the fax had been successfully transmitted. I then submitted the form via the website then faxed the information again. When asked if I could email this information the answer was no and the reason was that a fax provides a paper trail. When I called November 14, the data had been received and Dr. Warren had a contract with Regence — 5 months later.

I mentioned I worked for amazon.com because I know that amazon deals with an incredible amount of data and logistics and they’ve never used a fax machine. Transferring data such as tax ID numbers, NPI numbers and addresses is something computers do very well and humans do not. They lose faxes and contracts, they create typos, and they give misleading information.

There is no reason for this inefficient system to continue. The solution exists and it would benefit the citizens of Washington state to fix it.

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I also sent this letter to Representative Jim McDermott’s office and received a prompt reply asking for more information then they told me to keep them posted on the Office of the Insurance Commissioner’s response. The OIC did respond letting me know they were investigating Regence. I am not sure they read the letter. To be continued ..

Ingredients: one large bunch kale (I prefer Lacinato; discard larger stems); 1/2 to 3/4 cup walnuts; 1/2 cup water; salt to taste.

Instructions: Steam kale (or cook in the 1/2 cup of water) for 5-7 minutes. Blend (well) the kale with the walnuts and the 1/2 cup of water that was used to cook/steam the kale. I use a Vitamix blender and run it until the result is creamy green without any visible fiber of kale. Add judicious amount of salt as you blend, to taste.

That’s it!