Harman Patil (Editor)

Consumers United for Evidence based Healthcare

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Formation
  
2003 (2003)

Headquarters
  
Baltimore, MD

Type
  
National

Official language
  
English

Purpose
  
Empowering consumers to make the best used of evidence-based healthcare

Website
  
www.us.cochrane.org/CUE

Consumers United for Evidence-based Healthcare (CUE) is a coalition of consumer groups interested in evidence-based healthcare. It was formed in 2003.

Contents

CUE provides leadership to other efforts aimed at involving patients in the research process, strengthening the voice of consumers in healthcare research, which has been called for over two decades but which has not always been successfully implemented free of commercial influence. By creating opportunities for networking and learning, similar to those available to health professionals, CUE members can be empowered and have an ongoing source of information and tools about health issues of concern. This would, at least in theory, give the member groups an edge in advocacy activities.

Since its establishment, CUE members have been asked to testify to national committees, have contributed letters to the biomedical literature, sit on national professional society steering groups and advisory panels in addition many other contributions.

CUE Member Organizations

As a condition of membership. CUE members may not receive the majority of the funding from commercial sources and agree to attend an annual CUE meeting to set priorities, receive training, and collaborate with consumer and health advocates throughout the United States. CUE membership is currently about 40 member groups; the earliest members include the National Breast Cancer Coalition, Consumer Reports, and the Black Women’s Health Imperative, among others.

  • Annie Appleseed Project
  • Association for Pelvic Organ Prolapse Support
  • Association of Cancer Patient Educators
  • Black Women’s Health Alliance
  • Black Women’s Health Imperative
  • California Breast Cancer Organizations (CABCO)
  • Celiac Disease Foundation
  • Center for Science in the Public Interest
  • Centering Healthcare Institute
  • Cherab Foundation
  • Children With Diabetes Foundation
  • Community Campus
  • Consumer Reports
  • Faces and Voices of Recovery
  • Families USA
  • Homebirth Summit Consumer Engagement Task Force
  • Hope Wellness Center
  • Lamaze International
  • LymeDisease.org
  • Maine Coalition to Fight Prostate Cancer
  • MedShadow Foundation
  • Mothers Against Medical Error
  • National Alliance for Caregiving
  • National Breast Cancer Coalition
  • National Center for Health Research
  • National Center for Transgender Equality
  • National Committee to Preserve Social Security and Medicare
  • National Consumers League
  • National Council on Aging
  • National Environment Education Foundation
  • National Mental Health Consumers’ Self-Help Clearinghouse
  • National Partnership for Women & Families
  • National Vaccine Information Center
  • National Women’s Health Network
  • Nueva Vida
  • Our Bodies Ourselves
  • Ovarian Cancer Advocacy Alliance of San Diego
  • Philadelphia Ujima
  • Rhode Island Breast Cancer Coalition
  • SafeMinds
  • SCAD Alliance
  • TMJ Association
  • Washington Advocates for Patient Safety
  • Young Survival Coalition
  • Conferences and Training

    CUE has hosted two Summit conferences, in 2007 and 2010, attended by advocacy groups and others. CUE also holds one membership meeting each year, in Washington, DC, with communication via mail and e-mail between meetings and makes its slidecasts from the meeting available to the public.

    All of CUE’s training materials are available free of charge to the public, for example, training about critical appraisal & evidence-based healthcare. CUE also hosts social networking through Facebook groups and Twitter, and CUE contributes its views and support to international projects such as AllTrials. The USCC hosts CUE’s website and resource offerings and coordinates its program of matching educated consumers with researchers and policy makers who wish to incorporate consumers into their programs, for example guidelines developers.

    CUE Partnership Clearinghouse

    In keeping with its role as a consumer-scientist partnership, CUE maintains a clearinghouse function, which places consumers in contact with healthcare professional organizations so their voices might be incorporated into important healthcare decisions. Consumer representatives often play an important role in research implementation processes such as clinical guidelines panels, grant-writing, peer review, and conference workshops.

    Through the CUE Clearinghouse, health professional organizations can request consumer representatives for their research/research implementation projects and consumers can respond directly to those requests. Since 2007, CUE has fostered over 75 partnerships between consumers and policymaking organizations, including 12 in 2014 alone.

    CUE has created a series of short videos based on real-life interactions between professionals and patients participating on advisory panels. These videos demonstrate real-life scenarios and situations which professional guideline developers and consumer advocates serving on advisory panels are likely to encounter. These educational videos focus on specific steps in the advisory panel process such as preparing for a panel as a consumer, effectively moderating the panel as a Chair, and/or how to ensure that diverse opinions are heard, understood, and respected during advisory panel meetings.

    References

    Consumers United for Evidence-based Healthcare Wikipedia