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Getting the most out of EHA
as a CML patient advocate
14 June 2018
Jan Geissler, on behalf of the EuroBloodNET ePAG
CML Advocates Network, EHA European Affairs Committee, EuroBloodNet ePAG
jan@cmladvocates.net, @jangeissler
What I’ll cover today
1. Types of sessions at EHA, and why are they relevant for patient
advocates
2. Setting your priorities at EHA
3. Finding and talking to key opinion leaders at the poster sessions
4. Abstracts – where to find them, how to read them?
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 at EHA?
• 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 there!
• Everyone is there 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 the EHA congress? 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!
EHA 2018
Programme
• Education
Session
• Exciting trial
data
• Patient
Advocacy Track
on QoL/PRO
• Drug Pricing
• Posters
Program at a glance: https://ehaweb.org/congress/23rd-c/program/program-at-a-glance/
Program by Session Type: https://ehaweb.org/congress/23rd-c/program/session-type/
Example:
Personal
ADP
EHA
schedule
Example
CML
QoLSWG
CapacityBuildingPfizer
Biology and translational
research
CML CLINICAL
Novartis
(1)
(2)
How to get the most of the EHA congress as a CML patient advocate
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 in
plenary session 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
• Some in parallel to our capacity building
meeting
Satellite symposia: CML
• Pfizer Oncology:
Targeting the individual: Personalized
Treatment in CML
Thursday 8:00-10:00, Room A2
• Novartis Oncology - Recent Advances in
CML and MPNs
Thursday 10:45-12:45
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!
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!
Simultaneous/oral sessions: CML
• CML and MPN – Clinical, Sat 11:30-12:45, A2
• FINAL RESULTS OF THE DESTINY STUDY OF DE-ESCALATION
AND STOPPING TREATMENT IN CHRONIC MYELOID
LEUKAEMIA
Richard Clark
• CHOICES: A RANDOMIZED PHASE II TRIAL FOR IMATINIB
VS HYDROXYCHLOROQUINE PLUS IM FOR PATIENTS WITH
CML IN MCYR WITH RESIDUAL DISEASE DETECTABLE BY Q-
PCR
Gillian A. Horne
• THE EUTOS LONG-TERM SURVIVAL (ELTS) SCORE IS
SUPERIOR TO THE SOKAL SCORE FOR PROGNOSIS OF
SURVIVAL PROBABILITIES OF PATIENTS WITH CHRONIC-
PHASE CHRONIC MYELOID LEUKAEMIA
Markus Pfirrmann
• PHASE 2 STUDY OF RUXOLITINIB IN COMBINATION WITH
5-AZACITIDINE IN PATIENTS WITH MYELOFIBROSIS
Lucia Masarova
• ESTABLISHMENT OF A SIMPLE RISK SCORE TO PREDICT
SYSTEMIC MASTOCYTOSIS (SM) IN ADULT PATIENTS WITH
MASTOCYTOSIS IN THE SKIN (MIS)
David Fuchs
Workshops
Special topics discussed in a workshop like
setting
Examples:
• EHA-ISLH Laboratory Diagnosis Workshop, Sat
8:00-11:15
• Molecular Hematopoesis Workshop, Fri 8:00-
11:15
Scientific Working Group Session
Sessions defined by EHA’s Scientific Working Group, which
are topic-based expert groups coordinated by EHA
members
• Quality of life and symptoms: Patient reported
outcomes (PROs) as a common thread for optimising
offensive against neoplasm in hematology
• Saturday 09:45 - 10:45, Room A12
• Use of Patient Reported Outcomes (PRO) in hematology:
Does it matter? – A Hagenbeek
• Regulatory authority guidelines for development and use of
PRO instruments – T Ionova
• PROs in solid tumours and hematological malignancies: How
different are they? – P Goswami
• HM-PRO: A new measurement tool using a novel approach
for the assessment of PROs in patients with hematological
malignancies – S Salek
• Disease-specific SWG meetings on MPN, CLL, ALL, CML,
Myeloma, AML, T-Cell Lymphoma
Advocacy Sessions
2 „Patient Advocacy sessions“ defined by
patient advocates (Room K21)
Patient Advocacy session 1:
Quality of Life – why still an inconsistent
path to an obvious goal?
Date: Saturday, June 16, Room K21
Time: 08:00 – 09:30
Chairs: Sophie Wintrich (United Kingdom), Loris Brunetta (Italy)
• Introduction: Is quality of life a priority in treatment today?
A patient perspective Amanda Bok (Belgium)
• Quality of life during and after treatment, Dr. Harpreet Kaur,
Consultant Hematologist, Sheffield (United Kingdom)
• Treatment at home for haematological patients: safe,
feasible – and improving patient experience? Lars Kjeldsen,
Head of clinic, Rigs Hospital (Denmark)
• The impact of cancer and its treatment on sex life, Ananda
Plate (Germany)
• From frail to fit: The importance of pre-rehabilitation &
rehabilitation on QoL, Natacha Bolaños (Regional
Coordinator Europe, Lymphoma Coalition)
Patient Advocacy session 2:
Not only survival: Patient-relevant
endpoints and patient-reported
outcomes
Date: Saturday, June 16, Room K21
Time: 11:30 – 12:45
Chairs: Alfonso Aguarón (Spain), Maria Piggin (United Kingdom)
• Are study endpoints like OS and PFS most relevant to
patients and describe highest patient value? Jan Geissler
(Germany)
• Meaningful Patient-Reported Outcomes - How to learn
from real-life experience in clinical research, Guillermo
Garcia Manero, MD Anderson Cancer Center (USA)
• The end of huge questionnaires? Innovative electronic PRO
measurement tools, Dr Harpreet Kaur, Consultant
Hematologist, Sheffield (United Kingdom)
• Q&A Panel discussion – 15min
Advocacy Sessions
• 2 “Advocacy Sessions” defined by EHA
• EU Projects in Hematology: HARMONY
update (Sat, 14:45-15:45, K2)
• The real-world value of new-generation
treatments (Sat 16:00-17:15, K2)
Maria Piggin as speakers
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
and find the poster area,
they are sorted by poster
number.
• Note: There are different
posters on different days!
X
X
X
Interesting posters: CML
• See list of CML posters
at
www.cmladvocates.net
Poster visit planning …
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 https://ehaweb.org/congress/23rd-c/
• Go to „Abstracts Online“
• Select 23rd 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:
key 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 will follow shortly
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 Group
at http://fb.me/ehaadvocates and the WhatsApp group
• Join the Swedish Tapas meeting on Thursday at 21:00
• 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. You are here for
the EHA congress, not to be somewhere else
• Share the workload with other advocates (e.g. attend
different sessions), and agree that everyone contributes!
• Learn, network, engage, explore:
And don’t forget: Be bold and have fun!
Jan Geissler
<jan@cmladvocates.net>

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How to get the most of the EHA congress as a CML patient advocate

  • 1. Getting the most out of EHA as a CML patient advocate 14 June 2018 Jan Geissler, on behalf of the EuroBloodNET ePAG CML Advocates Network, EHA European Affairs Committee, EuroBloodNet ePAG jan@cmladvocates.net, @jangeissler
  • 2. What I’ll cover today 1. Types of sessions at EHA, and why are they relevant for patient advocates 2. Setting your priorities at EHA 3. Finding and talking to key opinion leaders at the poster sessions 4. Abstracts – where to find them, how to read them?
  • 3. 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.
  • 4. Why are we patient advocates at EHA? • 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 there! • Everyone is there at the largest European hematology congress with 10 000+ participants: clinicians, researchers, nurses, diagnostics experts, industry, medical societies
  • 5. 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 the EHA congress? 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!
  • 6. EHA 2018 Programme • Education Session • Exciting trial data • Patient Advocacy Track on QoL/PRO • Drug Pricing • Posters Program at a glance: https://ehaweb.org/congress/23rd-c/program/program-at-a-glance/ Program by Session Type: https://ehaweb.org/congress/23rd-c/program/session-type/
  • 9. 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 in plenary session might be best strategy
  • 10. 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 • Some in parallel to our capacity building meeting
  • 11. Satellite symposia: CML • Pfizer Oncology: Targeting the individual: Personalized Treatment in CML Thursday 8:00-10:00, Room A2 • Novartis Oncology - Recent Advances in CML and MPNs Thursday 10:45-12:45
  • 12. 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!
  • 13. 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!
  • 14. Simultaneous/oral sessions: CML • CML and MPN – Clinical, Sat 11:30-12:45, A2 • FINAL RESULTS OF THE DESTINY STUDY OF DE-ESCALATION AND STOPPING TREATMENT IN CHRONIC MYELOID LEUKAEMIA Richard Clark • CHOICES: A RANDOMIZED PHASE II TRIAL FOR IMATINIB VS HYDROXYCHLOROQUINE PLUS IM FOR PATIENTS WITH CML IN MCYR WITH RESIDUAL DISEASE DETECTABLE BY Q- PCR Gillian A. Horne • THE EUTOS LONG-TERM SURVIVAL (ELTS) SCORE IS SUPERIOR TO THE SOKAL SCORE FOR PROGNOSIS OF SURVIVAL PROBABILITIES OF PATIENTS WITH CHRONIC- PHASE CHRONIC MYELOID LEUKAEMIA Markus Pfirrmann • PHASE 2 STUDY OF RUXOLITINIB IN COMBINATION WITH 5-AZACITIDINE IN PATIENTS WITH MYELOFIBROSIS Lucia Masarova • ESTABLISHMENT OF A SIMPLE RISK SCORE TO PREDICT SYSTEMIC MASTOCYTOSIS (SM) IN ADULT PATIENTS WITH MASTOCYTOSIS IN THE SKIN (MIS) David Fuchs
  • 15. Workshops Special topics discussed in a workshop like setting Examples: • EHA-ISLH Laboratory Diagnosis Workshop, Sat 8:00-11:15 • Molecular Hematopoesis Workshop, Fri 8:00- 11:15
  • 16. Scientific Working Group Session Sessions defined by EHA’s Scientific Working Group, which are topic-based expert groups coordinated by EHA members • Quality of life and symptoms: Patient reported outcomes (PROs) as a common thread for optimising offensive against neoplasm in hematology • Saturday 09:45 - 10:45, Room A12 • Use of Patient Reported Outcomes (PRO) in hematology: Does it matter? – A Hagenbeek • Regulatory authority guidelines for development and use of PRO instruments – T Ionova • PROs in solid tumours and hematological malignancies: How different are they? – P Goswami • HM-PRO: A new measurement tool using a novel approach for the assessment of PROs in patients with hematological malignancies – S Salek • Disease-specific SWG meetings on MPN, CLL, ALL, CML, Myeloma, AML, T-Cell Lymphoma
  • 17. Advocacy Sessions 2 „Patient Advocacy sessions“ defined by patient advocates (Room K21) Patient Advocacy session 1: Quality of Life – why still an inconsistent path to an obvious goal? Date: Saturday, June 16, Room K21 Time: 08:00 – 09:30 Chairs: Sophie Wintrich (United Kingdom), Loris Brunetta (Italy) • Introduction: Is quality of life a priority in treatment today? A patient perspective Amanda Bok (Belgium) • Quality of life during and after treatment, Dr. Harpreet Kaur, Consultant Hematologist, Sheffield (United Kingdom) • Treatment at home for haematological patients: safe, feasible – and improving patient experience? Lars Kjeldsen, Head of clinic, Rigs Hospital (Denmark) • The impact of cancer and its treatment on sex life, Ananda Plate (Germany) • From frail to fit: The importance of pre-rehabilitation & rehabilitation on QoL, Natacha Bolaños (Regional Coordinator Europe, Lymphoma Coalition) Patient Advocacy session 2: Not only survival: Patient-relevant endpoints and patient-reported outcomes Date: Saturday, June 16, Room K21 Time: 11:30 – 12:45 Chairs: Alfonso Aguarón (Spain), Maria Piggin (United Kingdom) • Are study endpoints like OS and PFS most relevant to patients and describe highest patient value? Jan Geissler (Germany) • Meaningful Patient-Reported Outcomes - How to learn from real-life experience in clinical research, Guillermo Garcia Manero, MD Anderson Cancer Center (USA) • The end of huge questionnaires? Innovative electronic PRO measurement tools, Dr Harpreet Kaur, Consultant Hematologist, Sheffield (United Kingdom) • Q&A Panel discussion – 15min
  • 18. Advocacy Sessions • 2 “Advocacy Sessions” defined by EHA • EU Projects in Hematology: HARMONY update (Sat, 14:45-15:45, K2) • The real-world value of new-generation treatments (Sat 16:00-17:15, K2) Maria Piggin as speakers
  • 19. 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!
  • 20. 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 and find the poster area, they are sorted by poster number. • Note: There are different posters on different days! X X X
  • 21. Interesting posters: CML • See list of CML posters at www.cmladvocates.net
  • 23. 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
  • 24. How do I access the abstracts? • Go to EHA congress website https://ehaweb.org/congress/23rd-c/ • Go to „Abstracts Online“ • Select 23rd 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
  • 25. Patient Advocacy Booth: key 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 will follow shortly
  • 26. 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.
  • 27. 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.
  • 28. 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 and the WhatsApp group • Join the Swedish Tapas meeting on Thursday at 21:00 • Volunteer to help organise future Patient Advocacy Tracks and Capacity Building sessions
  • 29. 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
  • 30. 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. You are here for the EHA congress, not to be somewhere else • Share the workload with other advocates (e.g. attend different sessions), and agree that everyone contributes! • Learn, network, engage, explore: And don’t forget: Be bold and have fun! Jan Geissler <jan@cmladvocates.net>