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Patient Education on NETs

22nd Conference on Nuclear Medicine, Singapore

Josh Mailman

on 11 June 2013

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Transcript of Patient Education on NETs

What are Patients Looking For?
PRRTInfo experience
What Clinics Provide
Clinic websites need to provide more information to patients on the entire cycle of care -- from diagnosis to treatment to post-treatment follow-up -- including supporting information for families and caregivers

Your site will also inform medical professionals who are unfamiliar with new diagnostics / treatments

Need to provide guidelines on how to evaluate potential treatments.

Link to clinical guidelines as well as to discoverMi.org
Patient Advocacy and Outreach
Our mission is to provide the patient perspective to the Society of Nuclear Medicine; to advise the Society on the development of educational programs and materials which advance patients’ understanding and knowledge of the role of molecular imaging and nuclear medicine in both the diagnostic and therapeutic settings; and to advise the Society on public policies which impact nuclear medicine and molecular imaging and assist the Society in educating relevant audiences.
Knowledge is good!

Patients and Doctors can make informed choices when they have the best information available
Patient Education
Not just for NETs patients

Josh Mailman
Patient Advocate
President of NorCal CarciNETs
Chair of Patient Advocacy, SNMMI
Executive Baord Member, Society of Integrative Oncology
Member of NCI Task force on NETs
Founder and co-author of PRRTInfo.org
The Top 15 Search Items
1 prrt 1254
2 bad berka 1051
3 patient 903
4 pet/ct 853
5 baum 801
6 treatment 783
7 information 740
8 neuroendocrine 726
9 nuclear 700
10 medicine 663
11 zentralklinik 646
12 gallium 638
13 scan 632
14 lu177 630
15 hotel 518
16 conference 515
Two years, 1,000 unique visitors a month worldwide
SRS & CRS 22nd Annual Scientific Meeting 2013, 6 - 9 March 2013
11:00 Welcome: SNMMI Patient Advocacy Advisory Board Chair – Josh Mailman
11:15 Guided Exhibit Hall Tour
12:00 SNMMI-TS (Technologist Section) Plenary
1:30 What You Should Know About Radiation and Nuclear Medicine for Patients
2:00 Molecular Imaging 101 for Patients
2:30 History of Nuclear Medicine for Patients
3:30 Break Out Sessions (topics are Lymphoma/NETs/Dementia, format includes patient speaker, panel)
Sunday June 9th, 2013
SNMMI Patient Program
What do patient need
Diagnosis - Pre treatment
What / Why / How / Risk
What, Why & Expectations
Post treatment
Guidelines for exposure
Unexpected side effects
Follow up plan (eval)
Family / Caregiver
Full transcript