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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.
Dr. Michael J. Barry, president of the Informed Medical Decisions Foundation and Susan Edgman-Levitan, Foundation board member, are co-authors on a New England Journal of Medicine Perspectives article published today. In the article “Shared Decision Making – The Pinnacle of Patient-Centered Care," the authors explain that although advances in medicine continue to improve outcomes for patients as a whole, they can also leave patients and their families feeling disconnected from the decision making process and overwhelmed by their options.
The Informed Medical Decisions Foundation publishes this progress report each year on the research and demonstration site projects we provide support to through funding initiatives. In addition, the Report provides an overview of some of our key research and implementation accomplishments over the past year.
MaineHealth, a demonstration site of the Informed Medical Decisions Foundation, will be hosting a conference on May 17th, featuring national and local experts on shared decision making (SDM). Attendees will have the opportunity to attend a number of sessions on topics such as end of life care, risk communication, decision aids, patient engagement and preference-sensitive care.
Not long ago, I was talking with a news reporter about an article we published on how surgical decisions are made. The paper reported that surgery patients too often were not given enough information about reasonable options. During our discussion the reporter remarked that the findings of the study were all well and good for some people, but didn’t apply to her elderly dad. Her dad would never have wanted to have information or be involved in medical decisions about his care. Instead, he would just look to his wife to tell him what to do.
Last week the Association of Health Care Journalists held their Health Journalism 2012 conference in Atlanta, GA. Each year the conference seeks to provide context and clarity around health care issues that have taken center stage thanks to advances in medicine, political activity and public interest. So it's no surprise that shared decision making was a hot topic at this year’s conference. Dr. Michael J. Barry, president of the Informed Medical Decisions Foundation, was a member of the panel A reporter’s guide to medical decision making.
Last week, MaineHealth, an Informed Medical Decisions Foundation demonstration site, held its first conference dedicated to shared decision making (SDM). The conference, entitled “Shared Decision Making: The Patient Voice in Health Care,” featured presentations from national and local experts on SDM, and focused on bringing the patient perspective into the health care delivery system.
The debate over the U.S. Preventive Services Task Force's (USPSTF) final recommendation on PSA testing continued this week. Michael Barry, president of the Informed Medical Decisions Foundation and Mary McNaughton-Collins, medical director, each had an opportunity to speak on NPR radio programs about the USPSTF recommendation this week. They voiced their views on the recommendation -- both from the perspective of the Foundation and as practicing primary care physicians.
The Picker Institute and Gold Foundation selected our colleagues at Massachusetts General Hospital (MGH) as one of the 2012/2013 Challenge Grant recipients for their proposal entitled “Shared Decision Making in Medication Prescriptions: Improving Communication Skills and Professionalism for Internal Medicine Residents.” The overarching goal of the program will be to enhance the communication skills that residents need to effectively and efficiently implement shared decision making in all of their clinical interactions.
Posted in Current News
Tagged communication skills, decision aids, internal medicine, Karen Sepucha, Leigh Simmons, medication, MGH, Picker Institute, prescriptions, residency training, shared decision making
As many of our colleagues are spread across the country, our summer meeting is an opportunity for the many individuals who work on behalf of the Foundation to gather and reflect on what everyone has accomplished in the previous year and to get energized about upcoming projects. We were honored to have Otis Brawley, chief medical and scientific officer and executive vice president of the American Cancer Society, as well as the author of “How We Do Harm: A Doctor Breaks Ranks about Being Sick in America” as our keynote speaker this year. In addition to our keynote presentation, we had a stellar lineup of interactive and thought provoking sessions on Foundation-supported projects from staff, medical editors and esteemed guests.
After introducing video-based decision aids for people with knee and hip osteoarthritis, Group Health Cooperative saw a significant drop in rates of elective knee and hip replacement surgeries, as well as a drop in the cost of care. According to an article in the September issue of Health Affairs, Group Health found that introducing these decision aids resulted in a 38 percent reduction in knee replacement surgeries, a 26 percent reduction in hip replacement surgeries and a 12 percent decline in health care costs over a six month period.
Each "Voices" blog segment will feature a person we believe has a unique and valuable perspective on shared decision making. Today's guest is Peter Ubel, MD, author of "Critical Decisions." 1) In your own words, what is shared decision making and how does it improve the quality of health care? Put simply, shared decision making is the gold standard -- the sine qua non* -- for how medical decisions ought to be made. The pipe medical choice is rarely a function of medical facts alone. Tough decisions require value judgments, and it is the patient’s values that often determine which choice is best. An operation cannot be a “success” unless it was the right course of action to take for an individual patient. Treatment cannot “work” unless it was the treatment that best fits that patient’s individual preferences. Quality of care begins with shared decision making.
This month, a much anticipated study was published in Health Affairs that addresses something we are often asked at the Informed Medical Decisions Foundation: What are the effects of decision aids on utilization rates and medical costs? Researchers from Group Health Cooperative found that when decisions aids were used for patients making a decision about whether or not to have elective knee or hip replacement surgeries, there was a significant drop in surgical procedures as more patients opted for more conservative, less costly treatment options.
Posted in Current News, President's Corner
Tagged cost, decision aids, Group Health, health care, hip osteoarthritis, hip replacement surgery, Jack Fowler, knee osteoarthritis, knee replacement surgery, Michael J. Barry, PBS, practice variation
Health literacy affects everyone. Imagine you are trying to order food in a foreign country and you don’t speak the language. Just like learning a foreign language, understanding health information is a challenge -- one that everyone will face at least once in his or her lifetime. Health literacy, as defined by the Institute of Medicine (IOM) is “the degree to which individuals can obtain, process, and understand the basic health information and services needed to make appropriate health decisions.” According to the most recent National Assessment of Adult Literacy report, only 12% of adults in the U.S. are proficient in reading, understanding and acting upon medical information, and even these individuals struggle to understand complex health information at times. This critical gap has significant medical consequences for society.
In the latest edition of the New England Journal of Medicine (NEJM), authors make a call to action for policymakers to take meaningful steps to implement what the authors call “the sleeper” shared decision making (SDM) provision of the Accountable Care Act (ACA). The authors, Emily Oshima Lee from the Center for American Progress and Dr. Ezekiel J. Emanuel from the University of Pennsylvania, make a compelling argument that the benefits of SDM with the use of decision aids -- improvements in patient knowledge, lower anxiety over the care process, improved health outcomes, reduction in unwarranted variation in care and costs, and greater alignment of care with patients’ values -- should warrant swift action on the provision of ACA (Section 3506) that relates directly to SDM implementation. Lee and Emanuel argue that the current pace of Section 3506 implementation is detrimental to both patients and the health care system as a whole.
Posted in Current News
Tagged ACA, Affordable Care Act, decision aids, health care, health care costs, HHS, NEJM, patient values, practice variation, Section 3506, shared decision making
This year has been an extremely busy one for our team at the Informed Medical Decisions Foundation. As we mentioned in February when we launched our brand refresh, our look may have changed but our commitment to amplifying the patient’s voice in medical decisions has not. And I believe that is evident in what we’ve accomplished this year. So I’d like to take a moment to highlight just a few of our accomplishments in 2012 and what we have to look forward to in 2013.
Last week our medical editors, Foundation staff and esteemed guests took time out of their busy schedules to join us at our Boston-based Winter Medical Editors Meeting. A number of thought-provoking projects and developments were discussed and I’d like to highlight just a few for you. We were honored to have Victoria Shaffer, assistant professor at the University of Missouri and one of our grantees, present her fascinating work on the use of patient narratives in decision aids. Her current research is focused on developing a framework by which we can analyze and evaluate the content of patient narratives.
Posted in Current News
Tagged Albert Mulley, Angela Coulter, decision aids, Kathleen Fairfield, Kenrik Duru, Mary McGrae McDermott, medical decisions, Michael J. Barry, PAD, peripheral artery disease, Richard Hoffman, shared decision making, Suzanne Brodney, TRENDS Study, Victoria Shaffer
The latest edition of Health Affairs focuses on a topic very near and dear to our hearts, patient engagement. Throughout the history of the Informed Medical Decisions Foundation, we have been dedicated to studying the components of patient engagement and how it affects the health care industry. Research shows that when patients are actively engaged in their care, they can experience better health outcomes, at lower costs. It gives me great pleasure to recognize the Foundation team members who are co-authors on publications in this edition of Health Affairs: New Era of Patient Engagement.
Posted in Current News, President's Corner
Tagged Benjamin Moulton, decision aids, Group Health, Health Affairs, Megan Bowen, patient engagement, practice variation, RAND Corporation, Richard Wexler, shared decision making implementation
We are kicking off Shared Decision Making Month with our first guest post by Peter Ubel, physician and author of "Critical Decisions." We asked Peter a few questions about shared decision making and what you'll read below is his insightful take on what shared decision making is, what it isn't and why it is important to the future of medicine.
In your own words, what is shared decision making and how does it improve the quality of health care?
Put simply, shared decision making is the gold standard -- the sine qua non* -- for how medical decisions ought to be made. The right medical choice is rarely a function of medical facts alone. Tough decisions require value judgments, and it is the patient’s values that often determine which choice is best.
An operation cannot be a “success” unless it was the right course of action to take for an individual patient. Treatment cannot “work” unless it was the treatment that best fits that patient’s individual preferences. Quality of care begins with shared decision making.
The MAGIC (Making Good Decisions in Collaboration) program is exploring how shared decision making can be embedded in the core clinical practice of mainstream health services in the UK. The program is support by the Health Foundation and according to their website, “Our MAGIC programme is working with frontline health professionals and their priority projects across the UK to test how to embed best practice and overcome the barriers to change. We are one year into the programme and so far we’re seeing some interesting and inspiring results. We think we’re on our way to making healthcare more patient-centred and influencing more healthcare professionals to give patients the choice and involvement they are asking for.” In this guest post, Glyn Elwyn who co-lead the initial phase of the program with Richard Thomson, reflects back on his team’s involvement in MAGIC.
Posted in Current News, SDM Month
Tagged decision aids, Glyn Elwyn, MAGIC program, March 2013, patient-centered care, quality care, Richard Thomson, shared decision making, Shared Decision Making Month, The Health Foundation
Gary has specialized in health care journalism in his more than 30-year career in radio, television, interactive multimedia and the Internet. He is publisher of the website HealthNewsReview.org, leading a team of more than two dozen people who grade daily health news reporting by major U.S. news organizations. Previously, Gary was a tenured professor on the faculty of the School of Journalism and Mass Communication at the University of Minnesota, teaching health journalism and media ethics. Prior to that, he was the founding Editor-In-Chief of the MayoClinic.com consumer health website.
Jessie is president and founder of the Center for Advancing Health, a nonpartisan, Washington-based policy institute which, since 1992, has been supported by foundations and individuals to work on people's engagement in their health care from the patient perspective. Jessie draws on her own experiences of treatment for four cancer diagnoses, interviews with patients and caregivers surveys and peer-reviewed research as the basis of her work to describe and advocate for policies and practices to overcome the challenges people face in finding good care and getting the most from it.
During each one hour tweet chat, a moderator and subject matter experts will lead a conversation about various aspects of shared decision making, including implementation in clinical practice, palliative care, integration into state and federal legislation, and patient engagement. All participants should include the hashtag #SDMchat in their tweets so the conversation can be archived.
Posted in Current News, SDM Month
Tagged decision aids, federal legislation, March 2013, palliative care, patient engagement, patient-centered care, quality care, shared decision making, shared decision making implementation, Shared Decision Making Month, state legislation, Storify, tweet chat
The Health Foundation is an independent charity working to continuously improve the quality of healthcare in the UK. The Foundation wants the UK to have a healthcare system of the highest possible quality -- safe, effective, person-centred, timely, efficient and equitable. The organization believes that in order to achieve this, health services need to continuously improve the way they work. The Foundation is here to inspire and create the space for people to make lasting improvements to health services. Working at every level of the system, The Health Foundation aims to develop the technical skills, leadership, capacity and knowledge, and build the will for change, to secure lasting improvements to healthcare. Visit The Health Foundation website. Follow The Health Foundation on Twitter: @HealthFdn.
Angela, who is based in Oxford, England, coordinates the Informed Medical Decisions Foundation's international work. She is also a senior research scientist at the University of Oxford's Department of Public Health. Her previous roles include chief executive of Picker Institute Europe, executive director of policy and development at the King's Fund in London, and director of the Health Services Research Unit at the University of Oxford.
Posted in SDM Month
Tagged Angela Coulter, decision aids, March 2013, patient engagement, patient-centered care, quality care, shared decision making, shared decision making implementation, Shared Decision Making Month, The Kings Fund, UK
During Shared Decision Making Month, we will feature a number of guest bloggers who are working to advance shared decision making around the world. This guest post is by Don Kemper, MPH, Founder and CEO of Healthwise.
In my last visit with my doctor I asked if I should get a shot to prevent shingles. He didn’t think I needed it, but when I asked why not he gave me a link to a decision aid on his hospital’s website. He also promised that if I chose to get it I could just drop by—no appointment or visit would be needed. I stopped in the lobby and looked at the decision aid on my smart phone. It took me less than five minutes to reach my informed decision. I got the shot on the spot. It was easy on the clinical workflow and I appreciated saving the extra trip. Little by little, shared decision making is becoming a reality.
Posted in Current News, SDM Month
Tagged decision aids, decision support, Don Kemper, Healthwise, March 2013, patient voice, patient-centered care, patients, preference-sensitive decisions, quality care, shared decision making, Shared Decision Making Month
As part of Shared Decision Making (SDM) Month, we are excited to offer a series of FREE webinars throughout the month of March. These webinars will cover a variety of topics, including shared decision making implementation, maternity care, decision quality measurement and patient narratives. Space in these webinars is limited, so please register today to ensure your spot.
Bonus: Webinar attendees will be eligible to win a book written by an SDM Month Contributor. See webinar description for details.
Posted in Current News, SDM Month
Tagged decision aids, decision quality measurement, March 2013, maternity care, patient narratives, patient perspective, patient-centered care, quality care, shared decision making, shared decision making implementation, Shared Decision Making Month, webinars
Group Health Cooperative is a member-governed, nonprofit health care system that coordinates care and coverage. Founded in 1947 and based in Seattle, Wash., Group Health and its subsidiary health carriers, Group Health Options, Inc. and KPS Health Plans, serve more than 600,000 residents of Washington and North Idaho. The Group Health Research Institute recently conducted the first study of its kind investigating how the use of decision aids in routine clinical practice can affect care and costs. It was also the first major study of decision aids for knee and hip osteoarthritis. Trial results showed that people who had access to the decision aids tended to choose more conservative, less invasive options. Follow Group Health on Twitter: @grouphealth.
Shared Decision Making (SDM) Month has finally arrived! Over the next four weeks, an all-star lineup of experts will contribute to a variety of events focused on how shared decision making can improve the quality of health care and help make care more patient-centered.
The theme of the first week (March 4-8) is “Shared Decision Making Implementation in the Real World.” Throughout the week, we will hear from SDM Month contributors about the nature of implementing shared decision making into clinical practice, including the development and integration of decision aids.
Posted in Current News, SDM Month
Tagged Adrian Sieff, Angela Coulter, Annie LeBlanc, Charles Keller, decision aids, Donald Kemper, Glyn Elwyn, Group Health, Ishani Ganguli, Jeff Belkora, March 2013, Mayo Clinic, Megan Bowen, Nancy Rothman, Palo Alto Medical Foundation, patient-centered care, quality care, shared decision making, shared decision making implementation, Shared Decision Making Month, The Health Foundation, Victor Montori
Nancy is the Independence Foundation Professor of Urban Community Nursing in the Department of Nursing, College of Health Professions and Social Work of Temple University, where she serves as director of community-based practices. Nancy is also research chair of the National Nursing Centers Consortium, an Informed Medical Decisions Foundation-supported demonstration site. Her research focuses upon primary health care and community-defined health risks and prevention/intervention strategies. She serves as a consultant to the Public Health Management Corporation (PHMC) Nursing Network, a network of nurse practitioner-led primary care practices.
The Palo Alto Medical Foundation (PAMF) is a nonprofit health care organization and a pioneer in multispecialty group practice of medicine. PAMF is a member of Sutter Health, a family of hospitals and physician organizations serving more than 100 communities in Northern California. After merging with two other divisions under the PAMF name, the organization employs more than 1,000 physicians and serves more than 700,000 patients.
Charlie is a family care physician and shared decision making champion at Mercy Clinics, Inc. in Des Moines, IA. Mercy Clinics is also an Informed Medical Decisions Foundation demonstration site. His decision to join Mercy Clinics was influenced in large part by their history of innovation in patient-centered care and the use of health coaches. He has been involved in both inpatient and outpatient quality assurance projects a, and enjoys the challenges of implementing their ideas in the real-world setting. He remains a full-time practitioner focused on delivering high-quality individualized care with an emphasis on patient education. When he is not working he is devoted to his wonderful family, and enjoys photography, reading and whitewater rafting when the time allows.
Today’s blog post was written after speaking with Victor Montori and Annie LeBlanc, both members of Mayo Clinic’s Knowledge and Evaluation Research (KER) Unit. KER was formed in 2004 to translate medical evidence into clinical practice using shared decision making as its main methodology. The KER Unit has been designing and studying decision tools in clinical practice for eight years. In this guest post, we provide highlights of some of the Unit’s work and lessons learned from developing and implementing shared decision making tools.
Maureen has served as executive director of Childbirth Connection since 1995, positioning the organization as a powerful and effective advocate for evidence-based maternity care and maternity care quality improvement. She has 30 years experience as a researcher, educator, and policy analyst on maternal and newborn health issues. Maureen is co-leading the multi-year maternity initiative in collaboration with the Informed Medical Decisions Foundation. She is currently a member of the board of directors of the National Quality Forum (NQF) and the AMA/Physicians Consortium for Performance Improvement Maternity Workgroup. She also serves as co-chair of the 2012 National Priorities Partnership/Partnership for Patients Maternity Care Action Team, which is working to catalyze action to improve maternity care for mothers and babies. Maureen holds an MPH in health administration from Yale School of Public Health.
Week one of shared decision making (SDM) Month did not disappoint with great insight from providers, health systems, patients and others on the benefits and barriers to implementing shared decision making. We heard about innovative ways shared decision making is being implemented in the U.S. during Wednesday’s Shared Decision Making in the Real World webinar and got an international perspective during Tuesday’s first #SDMchat .
David is an associate investigator at the Group Health Research Institute in Seattle. He is also chair of the health services research section for The Obesity Society and chair of the obesity special interest group for the HMO Research Network. With the support of the Informed Medical Decisions Foundation, for whom he serves as a medical editor, he has collaborated with Group Health’s specialty leadership to implement and evaluate a new initiative to promote shared decision making around elective surgical care with video-based patient decision aids.
Week Two of Shared Decision Making (SDM) Month was extremely thought-provoking with insight about how and when shared decision making is appropriate along the care continuum. We heard about the need to empower women to be active participants in their maternity care decisions during Wednesday’s webinar and discussed the relationship between shared decision making and palliative care in Tuesday’s tweet chat. In addition, we heard from a powerhouse panel of leading health care experts about the role of shared decision making in maternity care, mental health, diagnosis and end of life care during Wednesday evening’s in-person panel.
Posted in Current News, SDM Month
Tagged care continuum, decision aids, decision quality, diagnosis, end of life, maternity care, mental health, patient-centered care, policy makers, quality care, shared decision making, Shared Decision Making Month, shared decision making policy
Recently, Dr. Ezekiel Emanuel and I called for more rapid certification of patient decision aids and for reforms to the Medicare payment system to incentive smarter, more widespread use of shared decision making. Our proposals were based on strong evidence that using simple but effective decision aids to make preference sensitive decisions about our health can lead to patients being more knowledgeable about their medical options and potential risks, and taking a more active role in treatment decisions.
Posted in Current News, SDM Month
Tagged cost savings, decision aids, Dr. Ezekiel Emanuel, Emily Oshima Lee, New England Journal of Medicine, sdm, Section 3506, shared decision making, Shared Decision Making Month, shared decision making policy
Shared decision making to inform and involve patients in their health care decisions is gaining great momentum as a strategy to improve the quality and value of health care. However, making patient participation in decisions the rule, and not the exception, is challenging. Now is the time to convene patient advocates, providers, health care systems, policy makers and insurers to engage in a critical discussion about how to address this challenge and make it easier to do the right thing by informing and involving patients when it matters most -- when a decision is looming.
Transforming care so that shared decision making is standard practice must be a multi-stakeholder effort, with women, clinicians, hospital administrators, payers and policy makers doing their part. Childbearing women and their advocates have a critical role in demanding this kind of care. Women can “vote with their feet” by choosing providers who engage them in shared decision making and honor their right to informed choice. But they can also advocate for system changes so that shared decision making becomes the standard.
Total costs for a population are driven much more by hospitalization rates than by length of stay or in-hospital costs. Involving informed patients in their own preference sensitive health care decisions is not only the right thing to do; it also has the potential to identify the right rates of medical interventions. The right rate may be lower in situations of baseline overutilization, or higher in situations of baseline underutilization. No one should take away from this study that informing and involving patients in their health care decisions is inadvisable because it will inevitably increase costs.
Health care leaders have to clearly see the value proposition of shared decision making, which primarily is insuring that well-informed patients are making decisions that are clearly aligned with their stated goals and preferences. There is ample evidence from randomized trials that patient decision aids can help support the shared decision making process. Health care leaders can support their care providers and teams by developing standard work flow processes that integrate patient decision aids as well as knowledge and preference assessment into routine clinical care; and by establishing metrics to track the distribution of decision aids and the occurrence of shared decision making conversations. Health care leaders – from both payer and provider organizations – must drive this change; however, engaging large employers in conversations about the value proposition for shared decision making may help this work move forward more rapidly.
Our interest in shared decision making began with a question: Why do rates of surgical procedures for prostate disease vary so much from one geographic location to another? We discovered one main reason for this practice variation was that patients were not being informed of their available treatment options. Determined to address this issue, we developed our first patient decision aid for benign prostatic hyperplasia (BPH) and through implementation of the tool, we saw a glimpse of a remarkable trend that medical research has proven time and again. When patients are fully informed of all their available treatment options, they make choices that are more aligned with their preferences and values; therefore, leading to a higher quality of care. This knowledge was just the beginning of our work to engage patients and providers in a shared decision making process.
The Informed Medical Decisions Foundation’s medical editors play a crucial role in the development of our Shared Decision-Making® programs, reviewing and approving all of the clinical content that we include. Beyond their work on these decision aid programs, all of our medical editors are champions of shared decision making in their own fields. Their work outside of the Foundation to expand our shared decision making knowledge makes them ‘change agents’ in the medical industry.
Recently a few of our medical editors have made some noteworthy accomplishments. Dr. Ebony Boulware was named the chief of the division of general internal medicine at Duke Medicine and will start that position next week. Her extensive shared decision making research was a contributing factor in attaining her new position. Dr. Michael Pignone was selected as the newest member of the US Preventive Services Task Force, which makes evidence based recommendations about clinical preventive services. His work on the board will impact clinical standards for many professional societies.
Just last week Dr. John Wong received a Patient-Centered Outcomes Research Institute (PCORI) Grant. The PCORI Funding Awards are aimed at finding ways to better deliver health care, improve care and lower costs. John’s grant aims to advance comparative effectiveness research by looking at outcomes that matter to patients, methods of combining evidence from observational studies and randomized controlled trials, and by identifying methods for assessing the value of evidence. John credits his work with the Foundation as an important piece of his accomplishment, “a grant from the Informed Medical Decisions Foundation supporting an initial collaboration with Duke from a few years back provided critical preliminary results that made the PCORI application possible.”
We are extremely proud of our medical editors for their contribution to our decision aid programs and for their continued efforts to spread shared decision making throughout the health care system.
Our medical editors share their reflections on working with the Foundation in this short video. We hope you enjoy hearing directly from these ‘change agents’.
[vimeo clip_id="73874970" width="601" height="338" title="0" byline="0" portrait="0" ]
Our medical editors reflect on their relationship with the Foundation
October is here once again, bringing a sea of colors into our daily lives. It’s not just the leaves though; the color pink has started appearing everywhere, which can only mean one thing -- National Breast Cancer Awareness Month. In honor of this month, the Informed Medical Decisions Foundation has teamed up with our commercial partner, Health Dialog, to provide important information to breast cancer patients everywhere. For the entire month of October, Health Dialog has made two of our Shared Decision-Making® programs on breast cancer and two planning guides on breast biopsies publicly available online for women and their families.
Patients have always been at the very core of the Informed Medical Decisions Foundation. We believe that patients should be informed and engaged in their health care. We always speak to patients first before creating a decision aid in order to learn from their experience in making a health care decision, and to understand what they wish they had known about their options. With every decision aid we work on, we conduct focus groups at several levels of the creation process. We take what the patients have to say during the focus groups very seriously and always take their opinions into account.
In preparation for an upcoming decision aid, the patient perspective team recently did a focus group on provider choice and birth setting for maternity. They spoke with women who had already had at least one child so we could learn from their experiences. A large part of the session was spent on finding out what kind of provider the women chose and why. We were struck once again by the fact that our focus group participants have different personal preferences. In this case, while some sought out midwives to lead their provider care team, others felt more comfortable with their provider being an OB-GYN. When we asked the group to respond to messages that would help other women understand they have a choice, the women were very engaged in giving feedback about how best to express this. The general consensus was that they wanted information they can trust and to be supported in making choices that are right for them.
Each focus group we conduct reinforces the importance of our mission and inspires us to continue empowering patients to become active participants in their health care.
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.
Posted in Current News, Decision Aid News
Tagged breast cancer, cancer, Cathy Finn, Chris Bettis, decision aids, Ellen Reifler, false positives, guidelines, Joann Elmore, mammography, overdiagnosis, overtreatment, Pam Wescott, US preventative task force
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 sites went about gathering and reporting data via the program DatStat Illume.
Our shared decision making demonstration sites first launched 4 years ago (2009), as an opportunity to study how our decision aids (DAs) worked in clinical settings, how implementation was best approached and how it benefitted patients. Megan describes the purpose of the sites as a way “to show that shared decision making can be moved to mainstream and integrated into clinical pathways.” Each demonstration site collected data from patients who viewed the DAs which we then analyzed.
Figuring out how to collect and analyze all this data was a challenge at first, as there were many different DAs with unique surveys at all 10 demonstration sites. A streamlined method was developed and we were able to learn a lot from the data we collected. We found that over 75% of patients thought the DAs were either extremely or very useful, and that the majority of the patient’s who were undecided about treatment options before viewing the aid were able to make a confident decision after viewing the aid. These findings further support our belief that participating in shared decision making and involving patients in their health care decisions is crucial.
Four years later, we are no longer providing funding to the sites, but despite that, all of the demonstration sites continue to practice shared decision making and use DAs.
If you are interested in learning more about how we collect this data, you can watch Meg and Vickie’s full presentation here