Supplementary Appendix

Transcription

1 Supplementary Appendix This appendix has been provided by the authors to give readers additional information about their work. Supplement to: McCoy MS, Carniol M, Chockley K, Urwin JW, Emanuel EJ, Schmidt H. Conflicts of interest for patient-advocacy organizations. N Engl J Med 2017;376: DOI: /NEJMsr

2 Appendix: Conflicts of Interest of Patient Advocacy Organizations Contents Sample Selection: Page 2 Data Collection: Page 5 Investigators Matthew S. McCoy, Ph.D. Michael Carniol, M.B.A. Katherine Chockley, B.A. John Urwin, B.S. Ezekiel J. Emanuel, M.D., Ph.D. Harald Schmidt, M.A., Ph.D. 1

3 SAMPLE SELECTION 1. Definition We define a Patient Advocacy Organization (PAO) as a 501(c)(3) public charity whose primary mission is to combat a particular disease or disability or to work towards improving the health and well-being of a particular population via activities including (but not limited to) providing patient education and services, funding research, and/or engaging in outreach and advocacy. Our study was limited to PAOs operating at the national level in the US. Hence we exclude organizations with a primarily international service area and organizations whose work is limited to a particular region in the US (including regional chapters of national organizations). 2. Search and inclusion criteria To construct our sample, we searched the GuideStar charity using the following criteria: 501(c)(3) public charity National Taxonomy of Exempt Entities (NTEE) codes in groups G (Diseases, Disorders, Medical Disciplines) or H (Medical Research) Annual revenue of at least $7.5 million This query returned 756 results. 3. Exclusion criteria We excluded all non-pao organizations, applying the following exclusion criteria: Medical facilities (e.g., hospitals, clinics) Research institutions (e.g., universities, laboratories) 2

4 Professional societies (e.g., The American College of Radiology) Non-operating and private foundations Single entity support organizations (i.e., organizations that accept charitable contributions for a single entity such as a hospital or university) Defunct organizations Regional organizations Internationally focused organizations Non-sufficiently health-related organizations 4. Organizations included in the study AACR for the Prevention and Cure of Cancer AIDS of Chicago Alex's Lemonade Stand Alliance for Lupus Research Alpha-1 Alzheimer's Disease and Related Disorders Association Alzheimer's Drug Discovery Alzheimers Disease Research dba Cure Alzheimer's Fund American Cancer Society American Diabetes Association American for Suicide Prevention American Heart Association American Institute for Cancer Research American Kidney Fund American Liver American Lung Association American Parkinson Disease Association Amyotrophic Lateral Sclerosis Association Aplastic Anemia and MDS International Arthritis Assistance Fund Autism Speaks Be The Match Breast Cancer Charities of America Breast Cancer Research Bright Focus Broadway Cares-Equity Fights AIDS Buoniconti Fund to Cure Paralysis Canary Fund Cancer Care, Inc. Cancer Research Fund of the Damon Runyon-Walter Winchell Cancer Research Institute, Inc. Caring Voice Coalition Chai-Life Line dba Chai Lifeline Child Mind Institute Children's Cancer Research Fund Children's Tumor Children s Cancer Recovery Christopher and Dana Reeve Coalition of Cancer Cooperative Groups 3

5 Colorado Health Network, Inc. dba Colorado AIDS Project Community Health Charities Conquer Cancer of the American Society of Clinical Oncology COPD Crohn s and Colitis of America Cystic Fibrosis Delete Blood Cancer DKMS Elton John AIDS Epilepsy Food Allergy Research and Education Fighting Blindness for AIDS Research for Embryonic Competence Gay Men's Health Crisis Gift of Life Bone Marrow Good Days (Chronic Disease Fund) Healthcorps Healthwell Hope Huntington's Disease Society of America International Myeloma JDRF International Leukemia and Lymphoma Society Livestrong Lung Cancer Alliance Lupus of America Lymphoma Research Marc Lustgarten Pancreatic Cancer March of Dimes Melanoma Research Alliance Michael J Fox for Parkinsons Research Movember Multiple Myeloma Research Multiple Sclerosis Muscular Dystrophy Association National Brain Tumor Society National Breast Cancer National Cancer Coalition National Federation of the Blind National for Cancer Research National Hemophilia National Kidney National Multiple Sclerosis Society National Organization for Rare Disorders National Parkinson National Psoriasis One Mind for Research Pancreatic Cancer Action Network Parkinson's Disease Patient Access Network Patient Advocate PKD Prostate Cancer Pulmonary Hypertension Association Research To Prevent Blindess Endowment Fund Rheumatology Research San Francisco AIDS St. Baldrick's Susan G Komen The National Children's Cancer Society The V United Spinal Association Urology Care ZERO - The End of Prostate Cancer 4

6 DATA COLLECTION Each organization included in the study was independently reviewed by two of three study team members (MC, KC, JU), using a formal data abstraction tool (reproduced below). Discrepancies in the reviewers reports were reconciled by a study team member not involved in initial data collection. 1. General Organization name: URL: 2. Form 990 Date of most recent 990 posted on organizational website: Total revenue (Part I, Line 12, Current Year): 3. Annual report Date of most recent annual report: Board Are board members names published in the annual report? (y/n): Are board members employers published in the annual report? (y/n): If any board members are employed by drug, device, or biotechnology companies, report their names, employer, and their position on the board. Board members who were formerly employed by a drug, device, or biotechnology company should be recorded with the indication former in the employer column: Name Employer Board position Donations Does the annual report list the names of donors? (y/n): Does the annual report claim that the list is complete? (y/n): Does the organization receive donations from drug, device, or biotechnology companies? (y/n): How are the amounts of donations published in the annual report? (exact figures/ranges/not published): Does the annual report indicate how donations were used? (y/n): Does the annual report include a statement of the total revenue received from industry or corporate donations? (y[amount]/n): If applicable, report in table below all donations from drug, device, or biotechnology companies (include amount and use of donation, if available): 5

7 Name Amount (if indicated) Use (if indicated) 4. Website Board Are board members names published on the website? (y/n): Are board members employers published on the website? (y/n): Where is this information located on the website (e.g., About > Board > Members)?: If any board members are employed by drug, device, or biotechnology companies, report their names, employer, and their position on the board. Board members who were formerly employed by a drug, device, or biotechnology company should be recorded with the indication former in the employer column: Name Employer Board position Donations Does the website list the names of donors? (y/n): Does the website claim that the list is complete? (y/n): How are the amounts of donations published on the website? (exact figures/ranges/not published): Does the website indicate how donations were used? (y/n): Does the website include a statement of the total revenue received from industry or corporate donations? (y[amount]/n): If applicable, report in table below all donations from for-profit health care companies (include donor name and amount of donation, if available): Name Amount (if indicated) Use (if indicated) Conflict of Interest/Donation Policy Does the website include a conflict of interest policy/ethics policy/policy for accepting corporate donations? (y/n): If yes, copy/paste relevant text and URL: 5. Saved items most recent Form 990 most recent annual report PDF print outs of webpages showing donation information (or screen captures if PDFs don t pick up the relevant text) PDF print outs of webpages showing a conflict of interest or donor policy 6

8 any downloadable PDFs related to corporate donation or sponsorship 7