International Industry-Independent Resources for
Patients and Healthcare Providers
Two great resources for general assistance:
Contact: Info@center4research.org
and
http://www.medicaldeviceproblems.com/
Many others:
Advocating Safety in Healthcare E-Sisters
U.S.-based online group with a special focus on Essure implants
Alliance for Human Research Protection
“Advancing Honest and Ethical Medical Research” (USA)
Breast Cancer Action
An “independent voice [and] activist watchdog organization” (USA)
Breast Cancer Action Quebec
“The only independent breast cancer organization in Canada whose mission is to work for the prevention of breast cancer and the elimination of environmental toxicants linked to the disease” (Canada)
Campaign Zero
Offers “quick information and checklists” to help patients and their families avoid being harmed in the hospital (USA) whose mission is to work for the prevention of breast cancer and the elimination of environmental toxicants linked to the disease” (Canada)
Canadians for Vanessa's Law
Promotes the Protecting Canadians from Unsafe Drugs Act (Canada). Contact David Carmichael at carmichaeldf@gmail.com
The Carlat Psychiatry Report
“An eight-page monthly newsletter (in both print and online form) that provides clinically relevant, unbiased information on psychiatric practice. We receive no corporate funding, which allows a clear-eyed evaluation of all available treatments” (USA)
Center for Medical Education
“Committed to providing the highest standard in continuing medical education since 1977.” Includes lectures and commentary by Jerome Hoffman, among others, in primary care and emergency medicine (USA)
Citizens for Patient Safety
“Improving health literacy and engaging and empowering patients and families to manage their own health” (USA)
Citizens for Responsible Care & Research, Inc. CIRCARE is a human rights organization dedicated to the protection of human subjects in research and medical treatmen
Clay Hodges is a North Carolina attorney who provides useful information (print and podcast) for people harmed by medical devices, available at his website
Cochrane Collaboration
Provides meta-analyses and systematic reviews. Cochrane fails to be as fully industry-independent as its guidelines suggest, and some of its recommendations appear compromised as a result, but many provide the highest-quality evidence and analyses available in multiple languages (UK)
Device Events
Uses the FDA’s adverse-events database reaching back twenty years (USA)
Essure Procedure
Online support and advocacy for women harmed by Essure, hosted by Erin Brockovich (USA)
Foundation for Integrity and Responsibility in Medicine
"FIRM researches problems with leadership and governance in health care that threaten core values...and advocates representative, transparent, accountable and ethical health care governance, and hopes to empower health care professionals and patients to promote better health care leadership." FIRM produces a widely read and important blog, Health Care Renewal, that addresses and exposes conflicts of interest and a wide range of healthcare policy issues.
gtprevencaoquaternaria's Blog: Brazil
“We are an industryindependent group, mainly working on quaternary prevention.” gtprevencaoquaternaria@googlegroups.com
Harding Center for Risk Literacy
Germany. Excellent group that “researches, develops and disseminates tools” that clearly explain the risks vs. harms of medical interventions. hardingcenter@mpib-berline.mpg.de
Health Action International
“Global network of independent experts in 70 countries share information and expertise in all areas of pharmaceutical policy, including intellectual property, pharmaceutical R&D, free trade, pharmaceutical marketing, clinical trial data transparency and pharmaceutical pricing [so] all people [can] receive the right medicine . . . at a price they can afford.”
HealthWatch
An independent charity for science and integrity in healthcare (UK)
Healthy Skepticism
Focuses on “reducing harm from misleading drug promotion.” Has a superb collection of journal articles and information on a variety of topics, including conflicts of interest, and has a global membership (Australia)
KCE Belgian Health Care Knowledge
Available in multiple languages (Belgium)
Live Life Mesh Free
Online discussion group for individuals living with surgical mesh implants (USA)
Lown Institute
“We seek to catalyze a grassroots movement for transforming healthcare systems and improving the health of communities” (USA)
"Serves as a catalyst for rethinking psychiatric care in the United States (and abroad). We believe that the current drug-based paradigm of care has failed our society, and that scientific research, as well as the lived experience of those who have been diagnosed with a psychiatric disorder, calls for profound change."
Manufacturer and User Facility Device Experience (MAUDE)
The FDA’s medical device adverse events database (USA)
MedShadow "...informs the public about the side effects, long-term effects, risks and benefits of medicine."
Mothers Against Medical Error
“Supporting victims of medical harm” (USA)
National Physicians Alliance
“Advancing the Core Values of the Medical Profession: Service, Integrity, and Advocacy” (USA)
National Women's Health Network
“Improves the health of all women by developing and promoting a critical analysis of health issues in order to affect policy and support consumer decisionmaking” (USA)
No Gracias
“Independent civil organization for transparency, integrity and equity in health policy, healthcare and biomedical research.” “Organización civil independiente por la transparencia, la integridad y la equidad en las políticas de salud, la asistencia sanitaria y la investigación biomédica.” (Spain and Spanish-speaking countries)
National Center for Health Research
The National Center for Health Research analyzes and explains the latest research-based information that patients, policy makers, and the public can use to improve their own health and to develop better health programs and policies. contact Info@center4research.org
Nordic Cochrane Centre
See Cochrane Collaboration, above (Denmark)
Patient, Consumer, and Public Health Coalition
An informal coalition of individuals and nonprofit organizations representing the interests of patients, consumers, health-care professionals, scientists, and public health experts and advocates. e are united to ensure access to safe, effective and affordable drugs and medical devices and safeguards against unsafe exposures from medications, personal care products, and other products in our daily environment
Patient Safety Action Network " "Patient driven, patient led" PSAN is a coalition of individuals and organizations consisting of patients who have been medically harmed, their loved ones, and concerned advocates. With a unified voice we focus solely on and with patients to raise awareness and to create accountability, transparency and safer healthcare.
Physicians for a National Health Program
“Non-profit research and education organization of 20,000 physicians, medical students and health professionals who support single-payer national health insurance” (USA)
Prescrire
“Independent information on treatments and healthcare strategies,” available in French and English (France)
ProPublica Patient Safety Community
Online forum for “constructive dialogue about patient harm, its causes and possible solutions” (USA)
Public Citizen Health Research Group Works to protect consumers by advocating for safer, more effective drugs, medical devices and other products; equitable health care services and more physician accountability
Right Care Alliance
“A coalition to stand up for what healthcare should be,” addressing both undertreatment and overtreatment and advocating for “right care” (USA)
RxISK
“Free, independent drug safety website to help you weigh the benefits of any medication against its potential dangers” (UK)
Safe Patient Project
Advocacy arm of Consumers Union (USA)
The NNT
Free evidence reviews using only “the highest quality, evidence-based studies (frequently, but not always Cochrane Reviews), and we accept no outside funding or advertisements” (USA)
Therapeutics Initiative
“Independent Healthcare Evidence”; provides excellent evidence reviews (Canada)
TranspariMED: "works to end evidence distortion in medicine. Failure to register and fully report clinical trials harms patients, wastes taxpayers' money, and slows down the development of new treatments, vaccines and cures."
Unplugged Health and Medicine
Part of the “Quarternary Prevention Movement’s purpose is to work together to create health and well-being.” (Cuba, Peru, Colombia, Chile, Uruguay; posts also available in English)
Up-To-Date
Subscription-based online “text-book” of medicine with continuing medical education, podcasts, calculators, and patient education resources that isn’t 100 percent industry-free but strives to come as close as possible (USA)
"The USA Patient Network consists of patients, caregivers, and their friends and family members that are united by a common goal: to make sure that medical treatments are as safe, effective, and as affordable as possible." Has a focus on medical devices and trains patients in research design and reliability.
VNS Message Board
Extensive information about the VNS device; Dennis Fegan and Donna Baum post here, along with many others (USA)
For those interested in contacting the central character of my book, Dennis Fegan, regarding the VNS device, you can reach him at dennisfegan@gmail.com
Woody Matters
Focuses on the harm caused by antidepressants (USA)
Resources for Journalists
Health News Review
Provides the best critical analyses available of media health news reporting (USA). They also critique original journal articles providing evidence-based reviews.
The List
An international list of industry-independent experts for the media, guidelines panels, and regulatory agencies (USA)
Pre$cription for Power Kaiser Health News superb resource that exposes "patient organizations" that may be industry fronts or that simply take industry funding. $116 million spent by pharma/device makers to influence 594 patient advocacy groups