Getting the most out of EHAas a patient advocate

EHA and EuroBloodNETPatient 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

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.

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,

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!

Too complex?

Just forclinicians?

NO!

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

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

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 scientificsessions at the congress!

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!

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!

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!

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

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 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.

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.

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 Groupat http://fb.me/ehaadvocates

• Join our Tapas meeting at 21:00 tonightEl 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: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

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!

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 FenauxLymphoma& 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 advocatesEl 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