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
Leukemia Patient Advocates Foundation, EHA European Affairs Committee,
Official objectives of the EHA congress
• 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.
Why are we patient advocates here?
• Understand science!
• Inform your members and patients about newest findings, good and
• Bring the patient voice into research, by speaking e.g. to clinicians
• 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,
Setting your priorities at EHA
• Think about impact for your community, not presence or
• 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!
• 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
• Symposia sponsored by a single company
on a specific topic/disease
• Run on Thursday (today), the day before the
• 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
• already published – data presented for the
first time at EHA will only be shown in the
• This year in parallel to our capacity building
• 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!
• 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
• Each session has 75 minutes, with 5
presentations of 15 minutes including Q&A from
• 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!
• Core target group: Hematologists!
• 2 „Patient Advocacy sessions“ defined by
• 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
Engage in the EHA Patient Organisations
Workgroup to propose topics for 2018!
• 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!
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
• Note down the lowest and
highest poster number of
• Go to Poster area (Hall 7)
and find the poster area,
they are sorted by poster
• Note: There are different
posters on different days!
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
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
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
How do I find people from companies in
my region or Europe at EHA?
• Usually the patient relations people of all companies are
• They usually check their email and WhatsApp during the
• Ask other advocates if they have the contact.
• You can also ask staff at the booth of the company.
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
• In case of a poster abstract, see them at the poster
• In case of an oral presentation, speak to them after
• 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
How do I meet and connect with other
• Go to the Patient Advocacy Booth
• Attend all Patient Advocacy Track sessions
• Join our EHA Advocates Facebook Group
• 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
Providing feedback to your community:
• 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
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
• 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!
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:
Acute Leukemias data at EHA 2017:
MPN data at EHA 2017:
CML data at EHA 2017: Tim Brümmendorf
MDS data at EHA 2017: Pierre Fenaux
Lymphoma& CLL data at EHA2017:
Dr. John Gribben
Track 1, Room N117 Track 2, Room N118
Optional offsite capacity building meetings (optional)
Joint tapas and drinks of advocates
El Patio de la Casa de Córdoba, C/ Víctor de la Serna, 30 Madrid, 28016
Crowne Plaza Madrid