The web page is designed to serve as a decision aid in shared decision making for lung cancer screening. 

What is shared decision making?  

Shared decision making is a relatively new concept in medicine that goes beyond what was previously known as “informed consent”.  The idea behind it is, idealistically, a good one; that the more a patient knows about a possible treatment, the better he can discuss it with his personal caregiver and make a decision that is best for him.  

Having said this, it must be acknowledged that there is relatively little and relatively early scientific evidence to prove that shared decision making results in more benefit than harm.

It is the author’s hypothesis, that in the specific case of lung cancer screening, shared decision making is causing far more harm than benefit.   To understand why, we need to go back in time.

Centers for Medicare and Medicaid Services (CMS):

At a U.S. Preventive Services Task Force (USPSTF) conference held in Maryland in 2012, Dr. Peter Bach recommended that lung cancer screening should not be implemented.  He went on to say, that if it were offered, CT screening should not be provided, unless the patient first went through shared decision making with a personal caregiver and only after reviewing information contained in a decision aid.

CMS overrode Bach’s recommendation and formally announced that Medicare and Medicaid would pay for lung cancer screening for those eligible. 

Eligibility would include those between the ages of 55-77 who had smoked at least 30-pack years and were currently smoking or had quit no more than 15 years earlier.

They also stated, however, that, before CMS would pay for CT screening, the participant must review a decision aid that contained information on about a dozen very specific topics on benefits and risks of screening.  After this, they would meet with their caregiver in a shared decision making consultation before making a final decision whether they wanted to be screened.  

This CMS decision was somewhat unusual.  CMS had never before placed this type of regulatory burden on any form of cancer screening (specifically including breast, colon, cervical or prostate cancers).  Furthermore, although they had insisted upon prospective randomized research to prove effectiveness of lung cancer screening, they required no such high-level evidence to show benefit from shared decision making. 

Are there problems with shared decision making in lung cancer screening? YES.

1. Shared decision making has not been proved to add value. There is no substantial evidence that it is helpful or that it does not result in harm.
2. Shared decision making places an unwelcome burden upon busy primary care practitioners.  These are very hard working people, who already work long hours. Furthermore, in many cases, they are not knowledgeable in the area of lung cancer screening and feel uncomfortable answering patient questions about CT screening.  This burden may result in unwillingness on the part of primary caregivers to offer CT screening to their patients at known high risk.
3. Most serious, the information on benefits and risks of lung cancer screening contained in currently-available decision aids is inaccurate and misleading.  Most of this inaccurate information comes from an article written by Drs. Gould and Bach in 2011.  This is the same Dr Bach who first proposed shared decision making to CMS the following year. This did not come as a surprise.  Bach had spent much of the previous decade campaigning stridently against lung cancer screening.

Has Shared decision making caused harm? Yes. 

Most forms of approved screening for cancer have “uptake” in the majority of people at risk. Specifically, more than half of all women have had mammograms, and PAP smears.  About half of Americans over age fifty have undergone screening tests for colon cancer and more than half of all men in the U.S. have had PSA screening for prostate cancer.

Despite the CMS decision to cover CT screening for lung cancer, only a very small percentage of those at the risk level defined by CMS (estimated to be about 8,000,000 smokers and ex-smokers) had a CT scan for screening to date.  Various studies estimate screening participation  range between 2-6%.  

A recent decision from the United States Preventative Services Task Force (USPSFT) suggests that CT screening be extended to a wider risk group, those between the ages of 50-80, with 20 pack-years of smoking (estimated to incorporate approximately 15,000,000 people). This would mean that the uptake figures above would have to be halved. 

There is no published research that has studied the question of whether low uptake is caused by the requirement for shared decision making.

Recommendations:

1. In the absence of strong evidence that shared decision making is valuable in reducing lung cancer mortality, the CMS requirement for decision aid-driven, shared decision making should be removed.
2. Decision aids in current use contain inaccurate information on benefits and risks of lung cancer screening, and should not be used in shared decision making. They must be replaced with decision aids providing accurate, balanced information. 
3. This web page is intended to serve as a decision aid for patients and primary care physicians, nurse practitioners and physician assistants, providing accurate and updated information on benefits and risks of lung cancer screening.  This information will be provided in considerable detail, in other sections of this web page.