"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

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. 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. 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. 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. Too
complex?
Just for
clinicians?
NO!

7. 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

8. 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

9. 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!

10. 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!

11. 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!

12. 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!

13. 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

14. 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

15. 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

16. 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

17. 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.

18. 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.

19. 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

20. 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

21. 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!

22. 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