Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.

How to get the most of EHA as a patient advocate

590 views

Published on

"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
  • Be the first to comment

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 jan@cmladvocates.net, @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 http://fb.me/ehaadvocates • 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

×