|
|
|
Samantha Jane
Scolamiero Samantha Jane Scolamiero has become a patient advocate in medical informatics drawing on 5 years of volunteer work founding and maintaining the Internet BRAINTMR mailing list. Herself a brain tumor survivor with subsequent acquired brain injury, she is dedicated to showing professionals how working together with patients as teammates (especially using online communication) promotes healing and well being and creates new health communities. In 1996 she was named a "Health Online Distinguished Achievement Award" winner by Dr. Tom Ferguson and acted as vice-chair for consumer health informatics in the American Medical Informatics Association's Working Group on Prevention and Health Evaluation. During a presentation at the AMIA Fall Symposium she declared herself a "PHD" -- Patient Helping Doctors -- just in case she needed letters after her name to legitimize her place at the podium. ;-) In 1997 Samantha assembled a small group of kindred spirits who in the third month Marched Fourth to found T.H.E. BRAIN TRUST a non-profit organization whose mission and vision have been the driving forces of BRAINTMR from it's inception. It became quite clear that her vision was much larger than the BRAINTMR list itself and so the new organization will expand this important work and is currently in search of funding to that end. Please follow "T.H.E. BRAIN TRUST" link for more information. In 1998 she received a Federal Appointment to a division of the National Institutes of Health on the Advisory Board of the National Center for Medical Rehabilitation Research in the National Institute of Child Health and Human Development. She was selected to represent brain tumor survivors and will serve a 4 year term beginning July 1, 1998. Upcoming Presentations TBA invite Samantha to do a presentation
Recent
Presentations "BRAINTMR on the Internet and BEYOND!" following Dr. Al Musella's presentation of http://www.virtualtrials.com National Brain Tumor Foundation, National Conference San Francisco, CA -- March 28, 1998
Massachusetts Institute of Technology Cambridge, MA -- March 15, 1998
Massachusetts General Hospital Brain Tumor Support Group Boston, MA -- Feb. 17, 1998
American Medical Informatics Association Fall
Symposium Panel: Using the Internet for Consumer Health: Development of a Position Paper American
Medical Informatics Association 1997 Spring Congress 1997 Partnerships for
Networked Consumer Health Information Conference Information
Connection 1997 1997 Partnerships for
Networked Consumer Health Information Conference Ongoing Activities and Presentations before 1997 BRAINTMR Founder (May 1993 - Present ) administers email based support group using Listserv, coordinates volunteer list-maintainers, produces marketing material, orchestrated weekend retreat in April 1995 for members from nine states
Faculty, Harvard Medical School Division of Continuing Education for the course The Computer as a Patient's Assistant (May 1995 , May 1996, Nov. 1997) offered a patient's perspective, during lecture and discussion, illustrated how the computer can be more than an assistant, it can be an empowering vehicle for patients. Federally Appointed Member of the Advisory Board for the National Center for Medical Rehabilitation Research. (four year term begins in 1998) Specially selected to represent brain tumor survivors to convey their rehabilitation needs at the federal level. Vice-Chair for Consumer Health Informatics (CHI) of the Prevention and Health Evaluation Informatics Working Group in the American Medical Informatics Association (AMIA) (Feb 1996 - Feb 1997) organized CHI Workshop "Examining the Internet" at AMIA 1996 Fall Symposium; As PHEWG member from June 1995, contribute a patient's perspective during discussion and working group strategic planning; PHEWG panelist at 1995 AMIA SCAMC in New Orleans. Activity Leader, MIT Independent Activities Period -Health Science Resources on the Internet, January
1994 Featured Speaker, Computer-based Patient Records
Institute Annual Summit(Dec. 1995) Workshop Leader, National Organization for Rare Disorders, Annual Convention (Sept. 1995) empowered participants in workshops to get online and develop their own online support groups. Publications Scolamiero, SJ. Internet insights: Patients Ride the Information Highway MD Computing 1998: 15 Scolamiero, SJ. Internet insights: Universal Access to Online Health Information, MD Computing 1997: 14 Scolamiero, SJ. Internet insights: Support Groups in Cyberspace, MD Computing 1997: 14(1) 12-17. "BRAINTMR on the Internet" Goes Beyond Brain Tumors!(This was BRAINTMR's entry into the first National Information Infrastructure Awards competition in 1995.) News Stories about BRAINTMR 2. An Article in Technology Review Magazine, November, 1995 3. An Article in TechTalk, the MIT newspaper, March 13, 1996
|
|
