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Helping Patients, Policymakers, and Providers Make Health Decisions: Systematic Reviews in Action

Slide presentation from the AHRQ 2011 conference.

Slide 1

AHRQ Annual Meeting 

Helping Patients, Policymakers, and Providers Make Health Decisions: Systematic Reviews in Action

Annette Bar-Cohen, MA, MPH
Executive Director
Center for Advocacy Training
National Breast Cancer Coalition

Slide 2

National Breast Cancer Coalition

  • A coalition of hundreds of organizations and thousands of individuals since 1991.
  • Mission: to end breast cancer:
    • Goals: Research, Access and Influence.
  • Grassroots advocacy, evidence-based.
  • Many accomplishments over the years.
  • But....not we launched.... Breast Cancer Deadline 2020®.

Slide 3

Breast Cancer Deadline 2020®

  • Mission: end breast cancer by January 1, 2020.
  • Strategic plan:
    • Reinvigorate a sense of urgency.
    • New way to collaborate, out of the box thinking.
    • Focus on: Prevention of metastasis, primary prevention of breast cancer and prophylactic vaccine.
  • A key ingredient—Educated Advocates.

Slide 4

Educated Consumers at all meaningful breast cancer decisionmaking tables

What Does That Really Mean?

  1. Find the tables and secure the seats.
  2. Define "educated consumers" and find some!
  3. Set criteria for "meaningful" decisions.

Slide 5

Educating Breast Cancer Consumers: Project LEAD®

  • Creation of Project LEAD course in 1995:
    • Curriculum created by advocates, educators and scientists.
    • Foundational, basic concepts, language of science.
    • Built on adult learning principles.
    • Outstanding teachers.
    • Highly committed students

Slide 6

Center for NBCC Advocacy Training

  • Multiple courses, levels, areas of focus, locations.
  • Research Advocacy—Project LEAD:
    • Project Lead Institute, Workshop, Clinical Trials.
    • Quality Care Project LEAD.
    • Mentoring.
    • Continuing Education:
      • LEADgradsOnline.
      • LEADcasts.
      • Advanced Topics.

Slide 7

Teaching Science to Adults: Using Adult Learning Principles

Image: A discussion at a table is shown.

Slide 8

Now... Seats at Many Tables...

Images: The logos of Markle Foundation, the Cochrane Collaboration, the Institute of Medicine, the National Comprehensive Cancer Network, the National Quality Forum, the San Antonio Breast Cancer Symposium the American Medical Association, the California Breast Cancer Research Program and the Congressionally Directed Medical Research Programs of the Department of Defense are shown.

Slide 9

Implications of Being Evidence Based

  • Be OK with taking unpopular positions:
    • Breast Self Exam.
    • Mammography guidelines.
    • Bone marrow transplant therapy.
    • Hormone Replacement Therapy.
    • Technology—e.g. Digital and 3DMammography, MRI, etc.
    • Overuse, underuse, misuse of interventions.
    • Guaranteed access to quality care for all.

Slide 10

Evidence and Systematic Reviews: Basis for Positions, Education, Policy Priorities

  • Position Papers on Web site.
  • LEADcasts, Continuing education.
  • CUE online course: "Understanding Evidence-based Healthcare: A Foundation for Action".
  • Project LEAD courses, conference.
  • Policy, legislative priorities.
  • International courses, forums.

Slide 11

NBCC Mammography Screening Position


Evidence from studies of varied quality indicate that, overall, mammography screening has a modest effect on breast cancer mortality. When analyzed in absolute terms, the death rate is reduced by just 0.05%. Like with all medical interventions, there are harms associated with screening mammography such as misdiagnosis and overtreatment. Two comprehensive reviews of the evidence conclude that the overall impact in mortality is small and biases in the trials could either "erase or create it." Women should discuss with their doctors their own risk profile, the potential benefits, harms, and complexities of screening mammography, and make informed decisions about screening. Mammography may provide benefits for some women, but it may also harm others.

From NBCC Position Paper: "Mammography for Breast Cancer Screening: Harm/Benefit Analysis." Updated July 2011.

Slide 12

Use of Meta Analyses and Systematic Reviews as basis for NBCC Positions

Analyses of the Mammography Screening Studies

The studies listed above have been subject to meta-analyses and systematic reviews by the research community. NBCC believes that the most thorough evaluations to date have been conducted by researchers affiliated with the Cochrane Collaboration4-5, by researchers for the U.S. Preventive Services Task Force (USPSTF) in 20092 and 20026, and by Dr. Armstrong, et al. in 2007 for the American College of Physicians.7 These scientists reviewed and evaluated the evidence on benefits and harms of mammography screening and assessed the quality of the trials.

Slide 13

Breast Self-Exam: Position Statement 

Updated July 2011

Research on BSE [Excerpt]

A systematic review that analyzed the Russian and the Chinese trials together—greatly expanding the statistical power—found no evidence for beneficial effects of BSE on breast cancer. The review did, however, confirm that there were twice as many biopsies with benign results in the screened groups compared to the control groups. The review also considered a trial looking at the benefit of clinical physical breast exam, but that trial was discontinued prematurely and did not accrue adequate data to answer the question.15

In summary, most studies have not demonstrated a benefit of BSE in women. Results from several studies, including the two randomized trials, show that BSE screening greatly increases the number of benign lumps detected. This negative consequence of BSE results in increased anxiety, physician visits, and unnecessary biopsies.

Although breast biopsies are relatively simple surgeries, they can cause distress, scarring and disfigurement.

Kosters JP and Gotszsche PC. Regular self-examination or clinical examination for early detection of breast cancer (Review). John Wiley & Sons Ltd. (for The Cochrane Collaboration) 2008.

Slide 14

Is Lumpectomy Equal to Mastectomy?

  • At least 6 large randomized trials show no difference in survival.
  • Not all women candidates for lumpectomy.
  • But for those that are:
    • There are still great difference in lumpectomy/RT rates based on geography and socio-economic status.

Slide 15

Lumpectomy = Mastectomy

Image: Three charts displaying Disease-free Survival, Distant-Disease-free Survival, and Overall Survival are shown.

Slide 16

Local Recurrence is Higher in Lumpectomy without Radiation

Image: A graph of Local Recurrence is Higher in Lumpectomy without Radiation is shown.

Slide 17

Polychemotherapy for Early Breast Cancer

  • 2005 meta-analysis by Early Breast Cancer Trialist Collaboration Group on polychemotherapy vs. no chemotherapy and various regimens (CMF, anthracyclines, etc).
  • Results: Women <50 years, 10% absolute gain in 15-year survival.
  • Women aged 50 to 69 years, 3% absolute gain in 15-year survival.

Slide 18

Other Examples

  • Effects of radiotherapy and of differences in the extent of surgery for early breast cancer on local recurrence and 15-year survival: an overview of the randomised trials. Clarke M, Collins R, Darby S, et al. Lancet Dec 17 2005;366(9503):2087-2106.
  • Meta-analysis of breast cancer outcomes in adjuvant trials of aromatase inhibitors versus tamoxifen. Dowsett M, Cuzick J, Ingle J, et al. J Clin Oncol 28(3):509-18, 2010.
  • Avastin (bevacizumab), with chemotherapy associated with a greater risk of death from side effects, than chemotherapy alone, according to an analysis of 16 randomized controlled trials. Ranpura, V, et al. JAMA Feb 2, 2011; 305(5), 487-494..

Slide 19

Consumer Involvement in Systematic Reviews

  • Commenting on pre-published systematic reviews of best evidence.
  • Commenting on protocols on how the review is to be done.
  • Commenting on summaries of reviews in plain English.
  • Preparing plain language summaries.

Consumers are also involved in:

  • Raising people's awareness about evidence-based health care.
  • Recruiting other consumers to help with the work.
  • Disseminating information about particular reviews.
  • Co-authoring systematic reviews of best evidence.
  • Searching journals.
  • Translating reviews and plain language summaries.

Slide 20

Example: Advocate Co-Author, Systematic Review

Image: A screen shot of The Cochrane Library Web site is shown.

Slide 21

Example: Advocate Co-Author, Systematic Review

Image: A screen shot of The Cochrane Library Web site is shown.

Slide 22

Example: Peer-Reviewer

Image: A screen shot of The Cochrane Library Web site is shown.

Slide 23

Consumers United for Evidence-based Healthcare (CUE)

Image: A screen shot of the U.S. Cochrane Center Web site is shown.

Slide 24

Barriers to use of Systematic Reviews, Meta-analyses, EBHC

  • Library may not provide information in consumer's first language; search terms and review titles are often unintelligible.
  • Plain language summaries not always monitored for quality and standards are vague.
  • High quality consumer training is not readily available.
  • Basing decisionmaking/policy setting on EBHC, is not easy for consumers or clinicians.
Page last reviewed October 2014
Internet Citation: Helping Patients, Policymakers, and Providers Make Health Decisions: Systematic Reviews in Action. October 2014. Agency for Healthcare Research and Quality, Rockville, MD.


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