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How to get the most of EHA as a patient advocate


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"How to get the most of EHA as a patient advocate", presented by Jan Geissler at the EHA / EuroBloodNet Capacity Building Meeting for Patient Advocates on 22 June 2017, Madrid

Published in: Health & Medicine

How to get the most of EHA as a patient advocate

  1. 1. Getting the most out of EHA as a patient advocate EHA and EuroBloodNET Patient Advocacy Capacity Building Meeting officially endorsed by EHA! 22 June 2017 Jan Geissler Leukemia Patient Advocates Foundation, EHA European Affairs Committee, EuroBloodNet ePAG, @jangeissler
  2. 2. Official objectives of the EHA congress (for hematologists) • Enhance knowledge of evidence-based approaches on diagnosis and treatment for hematologic diseases. • Access the latest research results (clinical, translational) • Be updated on emerging innovative techniques, diagnostic tools and risk-assessment strategies in hematology and its subspecialties. • Communicate, collaborate and network with representatives of a large international audience – medical professionals, national hematology societies, patient groups, medical industry and the media.
  3. 3. Why are we patient advocates here? • Understand science! • Inform your members and patients about newest findings, good and bad research • Bring the patient voice into research, by speaking e.g. to clinicians and industry • Address relevant topics to hematologists and industry! • Patient Advocacy Track sessions • EHA Advocacy Track • Education Sessions • Scientific sessions • Meet up - everyone is here! • Everyone is here at the largest European hematology congress with 10 000+ participants: clinicians, researchers, nurses, diagnostics experts, industry, medical societies,
  4. 4. Setting your priorities at EHA • Think about impact for your community, not presence or representation. • You could spend all your days at EHA meeting with pharma representatives, societies and other advocates, but is this why you came to EHA in Madrid? What is the outcome? • EHA is the best place to learn about newest science and clinical progress – not only from the „Key Opinion Leaders“, but from the second row of key people behind the scenes • Prioritize the EHA sessions, build your schedule around this, refuse to attend other meetings during those sessions!
  5. 5. Too complex? Just for clinicians? NO!
  6. 6. Plenary sessions • Usually opening ceremony, research awards, cross-cutting topics, or other key topics that are seen by hematologists of key importance • Patient advocates are usually less interested across diseases, so „cherry- picking“ of specific presentation might be best strategy
  7. 7. Satellite symposia • Symposia sponsored by a single company on a specific topic/disease • Run on Thursday (today), the day before the scientific meeting • Often in parallel to other meetings, e.g. investigator meetings, or our meeting here • Data presented here is • usually „pharma-compliant“ • usually less complex, more mainstream, more educational, good for the „big picture“ • already published – data presented for the first time at EHA will only be shown in the scientific sessions • This year in parallel to our capacity building meeting
  8. 8. Education Sessions • Overview on the „state of play“ and the most important news in your disease area • Usually less complex, good to get the „big picture“ • Usually repeated twice on two different days, to allow to participate in two, and to overcome overlaps • Don‘t miss „your“ education session, they are the basis for the scientific sessions at the congress!
  9. 9. Simultaneous/oral sessions • Submitted in March. 195 of them selected in April by EHA Scientific Programme Committee • Those who make it into the „oral sessions“ were rated highest – this is usually the „hot stuff“ • Clinical sessions are very relevant but complex. Forget about biology sessions – hardcore science! • Each session has 75 minutes, with 5 presentations of 15 minutes including Q&A from the audience • To prepare yourself, • Read the abstract of the session (on the web) prior to the session • Make yourself familiar with typical abbreviations • Make yourself heard - queue up to ask a question!
  10. 10. Advocacy Sessions • Core target group: Hematologists! • 2 „Patient Advocacy sessions“ defined by patient advocates • Innovative Clinical Trial Designs, Adaptive Pathways (MAPPs) and Patient Involvement in R&D (Saturday, 8:00-9:30, N115) • Pregnancy During and After Treatment: Myths and Reality (Saturday, 11:30-12:45, N115) • 2 “Advocacy Sessions” defined by EHA • EU Funded Projects in Hematology: HARMONY (Saturday, 14:45-15:45, N115) • New drugs in hematology: Fair pricing & access (Saturday, 16:00-17:15) Engage in the EHA Patient Organisations Workgroup to propose topics for 2018!
  11. 11. Poster sessions • This is the best place to meet key experts and their key staff members! • „Hot topics“ for us are often on the 500 posters (e.g. QoL, side effects, economics) • Go, ask, understand - there are no silly questions!
  12. 12. How do I find interesting posters? • Go to the meeting planner, find your disease area • Ignore „Biology“ (hardcore science) – look for „Clinical“ • „First author“ needs to stand in front of his/her poster for 1,5 hours – perfect opportunity, he/she can‘t escape! • Note down the lowest and highest poster number of interest • Go to Poster area (Hall 7) and find the poster area, they are sorted by poster number. • Note: There are different posters on different days! X X X
  13. 13. Why are abstracts so important? • Abstracts are short summaries of scientific news submitted by clinicians who apply to present them at EHA • They are available before the congress starts  read and prepare • After the congres, they can help you getting the facts right in your EHA report
  14. 14. How do I access the abstracts? • Go to EHA congress website, „Abstracts Online“ • Select 22nd EHA congress, then e.g. oral or posters • Enter your disease area. Identify those abstracts whose headline is most relevant. Then read the relevant abstracts
  15. 15. Patient Advocacy Booth: our meeting point • Joint booth of the EHA Patient Organisations Workgroup (European umbrella organisations) • Use this as your meeting point. You can still go for a coffee at a nearby expo booth • Booth number #560 this year
  16. 16. How do I find people from companies in my region or Europe at EHA? • Usually the patient relations people of all companies are at EHA. • They usually check their email and WhatsApp during the congress. • Ask other advocates if they have the contact. • You can also ask staff at the booth of the company.
  17. 17. How do I find a clinician who is at EHA? • Check the EHA abstracts in the EHA App or web-based programme. If they are mentioned as first author of an abstract: • In case of a poster abstract, see them at the poster session • In case of an oral presentation, speak to them after their talk • Clinicians usually go to the scientific sessions presented by colleagues. You might find him/her there • Send them an email and ask for a meeting during EHA. For future years: Their schedule is usually very full, so try to ask them for an appointment several weeks in advance.
  18. 18. How do I meet and connect with other patient advocates? • Go to the Patient Advocacy Booth • Attend all Patient Advocacy Track sessions • Join our EHA Advocates Facebook Group at • Join our Tapas meeting at 21:00 tonight El Patio de la Casa de Córdoba, C/ Víctor de la Serna, 30 Madrid, 28016 • Volunteer to help organise future Patient Advocacy Tracks and Capacity Building sessions
  19. 19. Providing feedback to your community: Writing reports • Take notes in scientific sessions • Take photos of slides (secretly). Make sure you cover at least the title slide and the conclusion slide(s), they are crucial. • Look up its abstract later to support writing your report • Take photos of posters. Have a barcode scanner on your phone, often you can scan the poster and get a PDF by email. • Download all interesting abstracts, simplify them and create a summary for your patients. • If you are writing a report on scientific matters, ask a friendly clinician who is attending EHA to ensure accuracy. • Think about who your audience is: Patients? Advocates? Both? Member Organisations? Each of these may need a differently written report
  20. 20. The bottom line: How to get the most of EHA • Think about your priorities • There is no better place to meet clinicians and learn about news that are crucial for the life of your patients • Think about the impact for your community, not presence or representation • Build your schedule around the key congress sessions. Refuse to attend other meetings during those sessions! • Don’t go to meetings because you feel obliged, e.g. because they have paid for your flight. You are here for the congress, not to be somewhere else • Learn, network, engage, explore: And don’t forget: Be bold and have fun!
  21. 21. EHA / EuroBloodNet Capacity Building: Plenary 1. EuroBloodNet and the ePAG (Pierre Fenaux) 2. Getting the most out of EHA (Jan Geissler) 3. Interpreting and understanding scientific presentations (Tamás Bereczky) Myeloma data at EHA 2017: Anna Sureda Acute Leukemias data at EHA 2017: Gert Ossenkoppele 14:00 MPE Advocate Development Programme MPN data at EHA 2017: Clare Harrison CML data at EHA 2017: Tim Brümmendorf MDS data at EHA 2017: Pierre Fenaux Lymphoma& CLL data at EHA2017: Dr. John Gribben 15:15 15:25 16:55 Track 1, Room N117 Track 2, Room N118 Optional offsite capacity building meetings (optional) 17:30 21:00 Acute Leukemia Advocates Network Joint tapas and drinks of advocates El Patio de la Casa de Córdoba, C/ Víctor de la Serna, 30 Madrid, 28016 20:30 15:55 16:25 14:55 14:30 What‘s next? Crowne Plaza Madrid Airport Hotel