ADVOCACY ISSUES

Posted September 2010 Key elements of health reporting:

* What's the total cost?

* How often do benefits occur?

* How often do harms occur?

* How strong is the evidence? (only 30 in the study!!!)

* Are there alternative options?

* Is this really a new approach?

* Is it available to me?

* Who's promoting this?

* Do they have a conflict of interest?

(Sorry we lost the reference)



"NIH Eyes Sweeping Reform of Peer Review"

from Science, November 1999, vol 286

This article describes the results of a "blue-ribbon" panel convened to discuss reforms at NIH. National Academy of Sciences president, Bruce Alberts "wants to completely restructured the array of study sections operated by NIH's Center for Scientific Review (CSR) which pass judgement on about three-quarters of NIH grant applications"..

According to this article CSR has already "fashioned new study sections that handle applications from clinical researchers who feel they don't get a fair shake in panels dominated by laboratory researchers and to provide homes for research proposals that don't seem to fit anywhere else".

What prompted the move to change the CSR system was a belief that the peer-review method was too often marred by "error-prone, turf-conscious nitpicking by obsolete study sections that reject novel ideas out of fear, ignorance or self-interest."

Ann's NOTE: There is a long way to go to fix the existing system. I have heard the complaints raised by researchers who are outside of the usual establishments, or areas of study. They do feel short-changed. It has been shown that the system favors those in postitions of power or key areas rather than new researchers. A prime example of this is the work done by the Department of Defense with its breast cancer research funds. The DOD chose to fund new idea people. This was a radical step. It is acknowledged by "insiders" that the best way to get funding is to have had funding. A bit of an "old boy network" thing.

Changes could be beneficial. I hope that "consumers", that is what they call concerned citizen activists, can be involved in these discussions. We often add the forgotten human face.


Advocates & Conflict of Interest

Statment by Margaret Borwhat Women's Cancer Advocacy Network, 1/04

Ann's Comments: Pharmaceutical Give-aways
Disclosure Letter (for Advocate Donations) Suggested 6/07
Med Journals Act to Limit Drug Firms' Influence

Reuters Article, 9/10/01 National/International Journals

Guidelines Set By Doctors With Ties to Industry
Tainted Medicine?
NEJM Says NO MORE INDEPENDENT Docs
Peer Review & Supreme Court

Trends in Pharmacological Sciences, February 2001

Openess, Accountability Etc.
Effects of Editorial Peer Review
Breaking Confidentiality Agreements w/Pharmas

Br Med J, 11/01

Independent? Academic-Industry Research
Barbara Ehrenreich Article

Harper's Magazine

Helen Schiff Responds
The Pink Ribbon Trap
Think Before You Pink
Unrecogn Molec Heterogeneity Obscures Effects

J Clin Oncology, 5/02

Feminists Demand Generic Cancer Drugs

National Org for Women 12/01

Life Extension Reveals Price Comparisons
American Healthcare is the Best in the World If...
Med Journals & Info:Adverse Effects

JAMA Study January 2001

Survey of Toxicity Assess & Reporting
Health System Failing Cancer Patients-Presidential Commission
20% New Drugs Later Show Serious Adverse Effects
Adverse Effects Reporting Standards NEEDED
Analysis: FDA Warning Ltrs to Investigators Onc Clin Trials
Randomized Trials Stopped Early : Systematic Review
 Medical Error Issues & Solutions

Excerpts from article and what you can do

Clin & Hosp Pharm Services & Medication ERRORS
Patient Safety Awareness Week-Med Errors
Drugs Over the Internet: Risky
Off-label Drugs Can Do Damage
Drug Complications: Outpatients
Universal Protocol (Medical errors)
Boston Ctr for Patient Safety
Books on Medical Errors
Organizational Silence & Hidden Threats to Pt Safety
Up to 5%  Clinical Trials Fraudulent

Dr. Frank Wells, Medico Legal Investiations, 1/15/02

Doctors Named as Authors May Not Have Seen Raw Data
Doctors accused of Cancer Trial Bias
American Oncologists May Not Regard Clinical Trials
Data Not Fully Published Originally
Informed Consent/Ethics Committee Approval
Lies, Damn Lies and Medica Science by David H. Freedman
Screening Trials-Mortality end point

Oncology Week in Review, 2/11/02

Misclassification of Cancer Deaths & Screening Trials
Criticism of Time Magazine (Breast Cancer) Excerpts

Karen Lurie, PopPolitics.com from Alternet.org

Speeding Drug Development

BioMedNet News, 1/15/02

Serious Drug Toxicities Found in Postmarketing
John R.Durant Responds
Timing of New Black Box Warnings/Withdrawals
Does a Drug do Better When it is New?
New Meds Seldom Contain Anything New:Study
How Well Tested Are New Cancer Drugs?
Variability in Safety Info in Pkge Inserts
Expanded Access Programs for Investigational Drugs
"What Doctors Need to Know"

New York Times Magazine, 5/5/02

Managed Care Limits Communications:Doc/Pt
"The Patient Failed Chemotherapy"
Reimbursement Biggest Barrier to Integrative Practice
Even Docs Are Confused by Medical Statistics, Study Shows
Limitations Studying Model Organisms

Sorry, we lost the source

"Animal Research Benefits Humans and Animals"
Are Animal Studies Useful to Humans?
Consumer Advg & Physn Diag/Prescribing

Am J Health-Syst Pharm, 3/02

Conflicts of Interest (Financial) & Bias

Nature, 3/02

Corp $$$ & Non Profit Groups
Conflicts of Interest & Research Results
Essential Guide to Health & Wellbeing May be NEITHER
Conflict of Interest - Comments by Roy M. Poses, MD
Letter re Ethics/Conflicts of Interest Oncology
Flow of Freebies to Doctors
Conflicts of Interest in Meta-analyses:Trials of Pharmacological Treatments
Drug Residue Contaminates Streams

US Geological Survey 3/02

Research Advocacy Network

LINK to site where advocates learn about participation opportunities/newsletter

Pharmas Most Prof Industry (Again) 2001

Public Citizen, 5/02

Spending 2 1/2 Times More on Mktg/Adv/Admin THAN R&D
Statement by Richard I. Smith, VP Policy & Research
Financial Ties/Conflicts of Interest-Pharma/Tobacco
Generic Makers Versus Pharmas
Call for INDEPENDENT Funding of Patient Groups
The Truth About the Drug Companies, by Marcia Angell
Issues about ' Evidence'

JAMA,

Number Needed to Treat/Absolute Risk
Statistical Expertise in Med Research
Tumor Response & Survival End Points: Clin Trials
Patient Group Gets ECOG Study of LOWER Dose
57% of Safety Studies NOT Published for Five Years or at ALL
Vitamin Mfgs-Cartel Price-Fixing Again???

July 3, 2002 The Nation via Alternet.org

University Fails to Offer Another Viewpoint

Letter to the Chronicle, Georgia Newspaper, 2002 Dr. Abbe, Athens, GA

Sites do NOT Put Into Practice Sooner

JAMA, 9/02

Comprehensive Recommendations:Radiation Oncology
Number of Patients Per Nurse:Life/Death

JAMA, 10/02

Delays In Reporting Errors & Incidence

JNCI, 10/02

Pharma Drug Trials MOSTLY Succeed:What's UP?

The Guardian (UK), 1/04

Cancer Journal Articles Lack Referenced Methods
Selective Reporting: OUTCOMES in Randomized Trials
Drug companies research, products more likely to perform well
Patient Navigation: Improves Timeliness of Diagnosis

Canadian Assoc Radiol J, 6/04

References for Patient Navigation article
Exaggerated/Misdirections:Interventions

JCNI, 7/02 All explained here

Contributor to Research Papers:Accurate Views?
Classification of Cancer Deaths
When the Tumor is Not the Target:An Advocate's Journey
Drugs Do NOT WORK on Most People
Absolute #s BEST for Discussing Treatment Options
Cancer is Top Killer - New Approaches Needed?
Too Many Drug Trials Stopped EARLY
Helping Doctors and Patients Make Sense of Health Statistics
OBITS - Various People who Contributed w/Special Grace

Janaury 19, 2004 New York Times

Cindy Francine Hills Melancon, an OBIT
Obits of Prominent Lesbians Dead of Cancer
Harold Benjamin: Founder The Wellness Community
Obit: Dr. Jeanne Petrek
Obit: Vera Komarkova, Mountaineer, Age 62
Steve Dunn - Founder of www.cancerguide.org - Cancer Advisor
Earl Woods, 74, Father of Tiger Woods - Prostate Cancer
OBIT: Soraya Winner of Latin Grammy, Activist w/Hispanic Women
Leslie H. Kopp, 53, Archivist Focused on Preserving Dance
Barbara Seaman, 72; Pioneer In Women's Health Mvment Lung Ca
Annie Cummings-Siple, December 2009
Judge Sylvia Pressler, Who Opened Little League to Girls
OBIT: Lucille Clifton, Poet Who Explored Intricacies of Black Lives
Wilma Mankiller, first woman to lead Cherokee, dies at 64
Catherine Greene of Schenectady, NY
Lilla Romeo, Breast Cancer Advocate, NYC
Dorothy Sucher, Reporter in Press-Freedom Case - THYROID Cancer
Frank C. Garland: Esophageal Cancer 2010
Jefferson Thomas, Pancreatic Cancer
Susan M. Cohen, Breast Cancer and Housing Advocate, NYC
H. Kenneth Schueler
Kathleen Helen Livingston
Daniele Doctorow, Musician, Family Foundation Director
Ann Fonfa/Annie Appleseed's Comments to NCI

NCI Listens and Learns, 10/06

http://ncilistens.cancer.gov/

Annie Appleseed on State Cancer Legsltve Database Progr
Biorepository Question - Annie Appleseed Comments
Using Research Findings in Cancer Care - Annie Appleseed Comments
Prioriting President Cancer Panel Recommendations - Annie Appleseed Comments
Elimination of Cancer Health Disparities - Annie Appleseed Comments
Eliminate Suffering/Death from Cancer - Annie Appleseed Comments
Cancer Topics for 2006 NCI Teleconference Series
Disappointed in New Patient Education Material
Nanotechnology Issues

Posted 12/06 more to come as they arise

Nanoparticles Can Damage DNA, Increase Cancer Risk
Nanoparticles of Alumina Slow Plant Growth
Informed Choice

A JAMA study

Information Needs of Patients with Cancer
Cancer Specialists Avoid Alt Therapies
Patient Track-abstract (presented at conferences)
Engaging Patients in Medical Decision Making
Informed Consent Not Always Given
U.S. LAST Among Indstrlizd Nations for Prvntbl Deaths

Philanthropy News Digest, January 2008

Kenkou, Inc.

LINK: "Raising Confidence in Health Decisions"

"Whether you are considering a new job, an educational plan for children, a new personal trainer, or which medical approach will improve health, complete and accurate information enables the best decisions.

When you examine varied options, inquire about comprehensive details, & discover evidence of success for each alternative, you can make a suitable choice. Matching the needs, the costs, & the benefits is the key to arriving at a personal decision".

Value of Chemotherapy

Excerpted from Oncology Treatment Updates Medscapes, Inc. 1999

Patient/Activist Perspective
Why Chemotherapy May Lead To Cancer
Potentially Fatal Adverse Effects From Chemo ONGOING
Chemo at the End of Life: Analyzed Decision Process

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