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Will global HCPs networks become communities of choice for rare-disease specialists? The global neuroendocrine tumour community

  1. Will global HCPs networks become communities of choice for rare- disease specialists? The global neuroendocrine tumour community Len Starnes Digital healthcare consultant Berlin Ilan Ben Ezri CEO & co-founder G-Med
  2. 1 Rare diseases and the social media imperative Why is G-Med home to the global NET specialists’ community? 2 The global NET specialist community in practice 3 4 Conclusions
  3. Rare diseases and the social media imperative
  4. What is a rare disease? Affects fewer than 1 in 2,000 (EU definition) One may affect a handful of patients, another 200,000 6,000 – 8,000 have been identified 350 million people worldwide may be affected Most are genetic in origin Effective cures are rare
  5. International cooperation is widely viewed as essential to drive progress in the management of rare diseases Due to the rarity and diversity of rare diseases, research needs to be international to ensure that experts, researchers and clinicians are connected…** ** what-is-a-rare-disease * publications/Fact_Sheet_RD.pdf How can things change? By increasing international cooperation in scientific research* ’’ ’ ‘ ‘
  6. Rare disease specialists are rare rare-disease-doctors-exist/ Practicing physicians rarely see rare disease patients International networking is essential to bring specialists and practicing physicians together to collaborate and share expertise
  7. Among top barriers physicians face to offering quality care to rare disease patients… Not enough opportunities to network with other physicians who treat rare diseases 54% US physicians agree 62% UK physicians agree Source: Rare Disease Impact Report: Insights from Patients and the Medical Community, Shire 2013
  8. For over 10 years HCPs social networks have been communities of choice for doctors to meet, collaborate and exchange opinion networks-what-have-we-learnt-what-can-we-expect networks-what-have-we-learnt-can-len-starnes Why 5.5 million doctors worldwide are members: Easy access to peers Fast feedback on clinical problem solving Specialist discussion fora Ability to tap into community wisdom
  9. Now global HCPs social networks have emerged offering compelling new cooperation opportunities for doctors treating rare diseases *Oberg K, Castellano D: Current knowledge on diagnosis and staging of neuroendocrine tumors. Cancer Metastasis Rev 30:3-7, 2011 (suppl 1)) CrossRef, Medline * Neuroendocrine tumours (NETs) Is a rare disease with an estimated global prevalence of 35 per 100,000*
  10. Steve Jobs was a rare disease patient…and the most famous neuroendocrine tumour patient Steve Jobs died of a neuroendocrine tumour of the pancreas 5th October 2011 pancreatic-cancer/
  11. Why is G-Med home to the global NET specialist community? Global HCPs’ social network
  12. The G-Med network straddles national borders Launched 2014 Members from 50 countries, mainly EU & USA 100,000 physician members Rigorous membership authentication process
  13. The G-Med community is active and collaborative 60 specialities plus multi-disciplinary groups 23,000 posts, comments, articles published 2016 Members spend 2,500 hours/month online 1,800 average views per post
  14. G-Med supports live-video social networking Collaboration options Live-video peer-to-peer discussions Virtual conferencing Expert panels enabled via live video and/or real-time forum posts Webinars, created by community members, live and on-demand Surveys and polls
  15. 60 medical speciality channels Anesthesiology Otolaryngology & Head and Neck Surgery Cardiology Pain Medicine Cardiothoracic Surgery Pathology Critical Care Medicine Pediatric Critical Care Medicine Dental Pediatric Dermatology Dermatology and Sexual Health Pediatric Emergency Medicine Developmental and Behavioral Pediatrics Pediatric Endocrinology Emergency Medicine Pediatric Gastroenterology Endocrinology, Diabetes, and Metabolism Pediatric Hematology - Oncology ENT and Head - Neck Surgery Pediatric Infectious Diseases Family Medicine Pediatric Neurology Forensic Medicine Pediatric Orthopedics Gastroenterology Pediatric Pulmonology Genetics & Metabolic Diseases Pediatric Radiology Geriatric Medicine Pediatric Rehabilitation Medicine Hematology Pediatric Rheumatology Hepatology Pediatric Surgery Immunology and Allergy Pediatric Urology Infectious Disease Pediatrics Internal Medicine Physical Medicine and Rehabilitation Neonatal and Perinatal Medicine Plastic Surgery Nephrology Psychiatry Neurology Pulmonology Neurosurgery Radiation Oncology Nuclear Medicine Radiology Obstetrics and Gynecology Rheumatology Oncology Sports Medicine Ophthalmology Surgery Oral and Maxillofacial Surgery Urology Orthopedics Vascular Surgery
  16. Examples of multidisciplinary groups & virtual conferences Family, Psychiatry, Neurology, Pediatrics OBGYN, Oncology, Family, Pediatrics, Infection Family, Internal Medicine, Endocrinology Neurology, Geriatrics, Family disorders Urology, Family, Endocrinology, Cardiology Oncology, Endocrinology, Surgery, Pathology OBGYN Dermatology, Immunology, Family Hematology, Oncology Family, Psychiatry Geriatrics, Family, Neurology Rheumatology, Orthopedics, Pain, Family Rheumatology, Dermatology Immunology, Dermatology, Family ADHD HPV Diabetes Movement disorders(Parkinson's) Sexual Dysfunction NET Ultra sound Psoriasis Multiple Myeloma Depression Alzheimer Pain SpA Urticaria Activity Specialties involved
  17. G-Med supports 4 global rare disease specialists groups Urticaria 4,100 members Multiple myeloma 3,720 members Autoinflammatory diseases Starting soon Neuroendocrine tumours (NET) 4,372 members
  18. The NET specialists’ community in practice
  19. Number of participants: 4,372 Leading specialities: oncology, endocrinology, surgery, pathology Number of countries: 28 Number of participating specialities: 9 Av group viewing time: 4:32 min Av no of readers per case study: 2,720 Av no of readers per post: 2,547 Av no of views per video: 2,315 G-Med NET group statistics demonstrate global reach
  20. Community is over 3x larger than membership of the European Neuroendocrine Tumour Society *Status May 2017 : 0 500 1000 1500 2000 2500 3000 3500 4000 4500 5000 Category 1 Category 2European Neuroendocrine Tumour Society (ENETS) membership 2017 G-Med global NET specialists’ community membership 2017 1,200* 4, 372** **Status May 2017: G-Med G-Med & ENETS members embrace specialists in: oncology, endocrinology, gastroenterology, pathology, radiology, nuclear medicine, surgery
  21. G-Med NET group uses a wide range of collaborative and interactive features Patient case studies Presented by multidisciplinary experts: oncologists, endocrinologists, pathologists, surgeons Examples Challenging and unusual patient cases, surgery dilemmas, suggested management consultations, treating very old NET patients , co-morbidity patients, pathology analysis dilemmas
  22. On-demand expert video presentations Live video peer-to-peer NET consultation rooms Virtual conferencing: webinars created by community members, live and on-demand G-Med NET group uses a wide range of collaborative and interactive features
  23. NET Imaging and pathology slides sharing G-Med NET group uses a wide range of collaborative and interactive features
  24. NET medical news New publications ENETS Guidelines FDA approvals NET events Invitations Registrations Summaries and highlights G-Med NET group uses a wide range of collaborative and interactive features
  25. NET surveys & opinion polls G-Med NET group uses a wide range of collaborative and interactive features
  26. Column1 39% Case reports 35% KOLs interactive advisory board video conferences 22% Recorded video lectures 4% NET news G-Med survey question: Which topics would you like to see more of in the international NET group? Case reports most popular topic
  27. Column1 80% of comments/answers concerning patient case reports are received within the first 48 – 72 hours following the request Discussion frequently continues months after the request Case reports trigger rapid responses to requests for 2nd opinion Average no of readers per case study: 2720
  28. Column1 35% Highly 44% Very 17% Moderately 4% Marginally G-Med survey question: How satisfied are you with the international NET group? Almost 80% very high or high satisfaction rates
  29. Column1 35% Beneficial 43% Highly beneficial 13% Moderately beneficial 9% Not beneficial G-Med survey question: Do you find the international NET group beneficial to knowledge sharing and networking? Almost 80% rank highly beneficial or beneficial
  30. Conclusions
  31. Based on the evident success on the G-Med NET community, global HCPs social networks provide an ideal platform for rare disease specialists and practicing physicians to connect, collaborate and disseminate medical expertise in real-time
  32. Medical societies such as ENETS are unlikely to provide comparable global social networking platforms within the foreseeable future*. As of May 2017, ENETS does not have any social media presence whatsoever * networks-what-have-we-learnt-can-len-starnes
  33. Physical temporally-limited medical society conferences such as the ENETS annual conference cannot substitute for continuous social media engagement final-11-dec-2013
  34. In future the utility of the global NET specialists’ community could be further enhanced through opportunities for NET patients to share their wisdom and expertise Ronny Allen neuroendocrine cancer patient and international advocate
  35. Professor of endocrine oncology, medical faculty of Uppsala University, Sweden Former vice-chairperson of the European Neuroendocrine Tumour Society (ENETS) Member of the ENETS advisory board ENETS Life Achievement Award Recipient 2017 Global networking is important for the further development of the NET field Kjell Öberg ‘ ’
  36. This presentation is part II of an analysis of global HCPs social networks in the management of rare diseases. See comment on Linkedin Pulse: activity/posts/
  37. T: + 972 50 40 44352 facebook.comGMedPhysicians Ilan Ben Ezri CEO & co-founder G-Med
  38. T: + 49 30 781 5513 M: + 49 172 1788253 Skype: lenstarnes Len Starnes Digital Healthcare Research & Consulting