The Informed Medical Decisions Foundation is currently working to expand the international reach of our decision aids with a number of exciting localization projects currently in the works with our partner Bupa and other international colleagues. Three academic groups in French-speaking countries are working with our staff to develop a study to evaluate the use of decision aids for prostate cancer screening.
The updated Cochrane Collaborative review of 86 randomized control trials (in six countries), involving 34 decisions, set out to find out how well decision aids prepare people to participate in decisions that involve weighing benefits, harms and scientific uncertainty. What the authors found was that decision aids not only improve the individual’s knowledge of their options, including the benefits and harms of those options, but decision aids also assist people in reaching choices that are more consistent with their informed values, while fostering collaboration with their provider.
The strongest argument for shared decision making is that patients have a fundamental right to understand all the reasonable medical options and the arguments for and against each option. Simply put, informing and involving patients in medical decisions is the right thing to do. By being informed and involved, patients have the ability to avoid having surgery that exposes them to risks they do not think are worth the benefits. In addition to those certain benefits, the evidence is also mounting that shared decision making is likely to pay for itself -- and it may well do better than that.
This study will advance the evidence base regarding best methods for facilitating informed decisions among patients with knee and hip osteoarthritis (OA) by comparing DVD and Crossroads online formats of decision aids (DAs) for these conditions.
The International Patient Decision Aid Standards (IPDAS) Collaboration has led to the development of a quality checklist and, more recently, an instrument to assess the quality of decision support interventions. We recognize that further work is required to examine the relationships between International Patient Decision Aid Standards instrument (IPDASi) scores and the outcomes achieved in clinical trials.
Dartmouth-Hitchcock Medical Center (DHMC) is comprised of physicians, specialists and other providers working together at different locations to meet the health care needs of patients in northern New England. The Center for Shared Decision Making (CSDM) at DHMC, opened its doors in 1999 as the first center in the U.S. to be dedicated to shared decision making, and became a Foundation funded primary and specialty care demonstration site at that time. True pioneers in the shared decision making arena, DHMC continues to perfect the process of providing access to decision aids and decision support to patients as a routine process of care.
The University of California San Francisco (UCSF) Breast Care Center (BCC) is a high volume specialty clinic providing multi-disciplinary care in a National Cancer Institute-designated Comprehensive Cancer Center. Eight medical oncologists and four surgeons, among dozens of specialists, providers and staff conduct more than 1,000 consultations annually, caring for more than 600 newly diagnosed patients each year. The Breast Care Center at UCSF became a Foundation funded specialty care demonstration site in 2005 in order to offer their patients a unique type of decision support and guidance along their journey.
In 2006, the Foundation first started funding HealthNewReview.org, a nonprofit website that evaluates health care journalism, advertising, marketing, public relations and other messages that may influence the public. As you can see above, the project has undergone several logo redesigns. Unfortunately, the Foundation had to end funding in 2013 but we continue to promote and support HealthNewsReview.org in other ways. Our connection to the website goes way back to our founding. Gary Schwitzer, the creator and publisher of HealthNewsReview.org, worked for the Foundation during the 1990s in helping create our early decision aids. His interviewing and production skills were crucial in the success of our early decision aids. We hope that HealthNewsReview.org continues to critique mainstream health care journalism to better inform patients far into the future.
A critical component of amplifying the patient’s voice has come from our unique commitment to gathering the patient perspective. For over a decade we’ve had a team specifically dedicated to learning what is important to patients through focus groups and individual interviews. These discussions fill the gap between what clinicians might think is important to patients and what patients actually consider important. For instance, Karen Sepucha’s groundbreaking research
highlighted the difference between what doctors think patients believe, and what patients actually think about the importance of breast conservation for early stage breast cancer. Understanding this gap is vital in providing patients with the resources they need to make better health decisions. The valuable insight we’ve gained from talking to patients has been directly incorporated into our decision-aid development, as well as our research and advocacy activities. The Foundation’s commitment to the patient perspective will carry forth into the freshly merged Healthwise.