Advancing Shared Decision Making
For over two decades, the Informed Medical Decisions Foundation has been working to advance shared decision making through research, policy, clinical models and patient decision aids. We believe that the only way to ensure high quality medical decisions are being made is for a fully informed patient to participate in a shared decision making process with their health care provider.
Breast cancer screening with mammography is a highly personal health decision for women age 40 and older. There are few decision aids to help guide women about the decision to screen for breast cancer.
The Informed Medical Decisions Foundation is in the process of creating a web-based mammography decision aid for women of different ages (40-49, 50-74 and age 75 and older). The decision aid will fit nicely within our library of cancer screening tools. The program will support our mission by presenting mammography as a personal choice for each woman, while also discussing the best available evidence about how many lives are saved with regular screening. “We are trying to present the information in the most easily comprehensible way so women can use that to make their own decisions,” explains Chris Bettis, our patient perspectives and research specialist.
“The decision to screen and how often to screen is complicated, and there are different pros and cons, depending on your age,” says Cathy Finn, our senior clinical research associate and project lead on the mammography decision aid. “However, it is an excellent opportunity for women to engage in shared decision making (SDM) with their doctor.”
This topic is especially important as many providers and their patients don’t think of mammography as a choice, but as something you “must” do to protect your health. In choosing to have a mammogram, there is the risk of discomfort, false positives and overtreatment. In choosing not to have a mammogram women may be at risk for possible undetected cancers, or cancer that might be detected later and require more aggressive treatment.
In the US there is pressure from the media and advocacy groups for women 40 and older to have annual mammograms; however, doctors and medical guidelines disagree about when to start screening, and how often to screen. Some guidelines recommend women start screening at age 40, other guidelines recommend starting at age 50. There is disagreement about just how many lives are saved by annual screening, and if getting a false positive is really a downside to being vigilant about finding cancer early.
The United States Preventative Task Force (USPSTF) reviewed some of the best studies of over 600,000 women, and based on these studies they recommend that women in their 40s can discuss the decision to screen with their providers as they may not benefit as much as women 50 and older. Women 50 and older can screen every other year and get similar benefit as annual screening, but with less risk of a false positive. Women age 75+ can continue to screen for breast cancer as long as they are in good health and could benefit from treatment if breast cancer is found.
Other countries, such as the UK, Canada and Australia, recommend starting mammograms at the age of 50 and screening every two years.
We wanted to learn what women thought about screening, so we invited women in three different age groups (40-49, 50-74 and 75+) to talk about mammography. We learned that women were mostly aware of the positives surrounding mammograms and knew less about the downsides. According to Pam Wescott, director of patient perspectives, “many women in these focus groups reported that they understood screening as their decision. In all age groups, some feel guilty and irresponsible if they don’t have their annual mammogram.” Ellen Reifler, senior research associate, patient perspectives, added, ”although most women were unaware that there were any downsides to screening, they were receptive to hearing more about the reasons to screen every two years vs. every year.” It was clear from the focus groups that women could use more information about screening and a breast cancer decision aid could be useful.
Joann Elmore, MD, MPH is the medical editor for the decision aid. Joann is an expert in breast cancer screening and treatment, and she will guide development of this decision aid.
This decision aid will be available in 2014.
Just before the Thanksgiving holiday, our implementation manager, Megan Bowen, received her health coach certification from the High Value Healthcare Collaborative (HVHC). This certification gives Megan the ability to coach and guide patients through medical decisions, taking into consideration their … Continue reading
New guidelines from the American College of Cardiology and the American Heart Association on the assessment of cardiovascular risk and the manipulation of cholesterol levels to mitigate that risk have certainly been in the news. The guidelines appropriately use high … Continue reading
In 1621, just 40 miles south of the Informed Medical Decisions Foundation headquarters, the Pilgrims and the Wampanoag joined together to give thanks for the first successful harvest. Although today’s annual celebration is quite different from that first Thanksgiving, one thing remains the same — Thanksgiving is a time to give thanks. As this autumn holiday nears, we’d like to take a moment to reflect on the many blessings of 2013, as well as those of years past. Continue reading
Recently two of our staff members, Vickie Stringfellow, research methodologist and Megan Bowen, implementation manager, gave an informative webinar about how we collect patient-reported measures. They discussed it in relation to our demonstration sites and how exactly all of the … Continue reading