"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
How to get the most of the EHA congress as a CML patient advocatejangeissler
The European Hematology Association's (EHA) annual congress will start on 14 June 2018 in Stockholm. The co-founder of the CML Advocates Network and member of the EHA European Affairs Committee, Jan Geissler, on behalf of the EuroBloodNET ePAG, presents this webinar on how to get the most of EHA as a CML patient advocate.
Through the webinar you will be able to know more about topics as:
- Types of sessions at EHA and their relevance for a CML patient advocate
- How to set your priorities attending this huge congress.
- How to find and engage with key opinion leaders at the EHA Posters Sessions.
- More about EHA Abstracts: how to find them and how to read them.
2010 11 13 european cme forum jan geissler 1.5jangeissler
This document discusses how patient advocacy groups can strengthen medical education and best practices. It notes that patient groups can provide complementary perspectives to medical professionals by sharing their experiences living with diseases. They can help improve patient-doctor communication and identify unmet patient needs. The document advocates for greater involvement of patient voices at scientific conferences and in educating doctors and nurses, to provide more holistic and patient-centric care.
Patient entrepeneurs, pop up uni, 9am, 3 september 2015NHS England
This document outlines David Festenstein's remarkable recovery from a severe stroke through developing a 7-step program. It describes his background and qualifications in communication before the stroke. After becoming paralyzed on his right side, he kept a journal and was invited to share his recovery approach. He reframed his experience positively and developed 7 distinct steps. This led to opportunities presenting his approach to healthcare professionals and universities. He then created a mobile app and online materials to make his recovery program more widely accessible. His vision is to help others recover from health setbacks and prevent issues in the future.
Talking to the "real world": Communicating Science to General AudiencesKara Gavin
The document discusses the role of communications staff in helping scientists share their research findings with non-expert audiences, noting the general public has low science literacy, distrust of some scientific topics, and gets most science information from entertainment media rather than scientists directly. It provides tips for scientists on how to effectively communicate with the public by using plain language, focusing on relevance, explaining technical terms, and employing good design principles to improve understanding.
This document discusses the benefits and challenges of collaborating with end users in research. It provides examples of engaging stakeholders in health research at the University of Hertfordshire, including those representing mental health, special education needs, LGBTQ issues, and transportation/planning departments. While collaboration brings diverse perspectives, it also faces challenges like ensuring methods are appropriate for all groups. Overall, engaging end users can improve research relevance but requires navigating different priorities and communication styles.
Implementing Patient & Public Involvement in Research: 27.06.2017RDSLondon
This document provides guidance on effective patient and public involvement (PPI) in research. It discusses what PPI is, who can be involved, and how to avoid tokenistic involvement. PPI refers to actively working with patients, caregivers and the public to plan, conduct and disseminate research. Effective PPI ensures research questions reflect patient priorities, methods are appropriate, and findings are disseminated to lay audiences. The document provides examples of how patients can be involved at different stages of the research process and urges researchers to meaningfully incorporate PPI in grant applications.
How to get the most of the EHA congress as a CML patient advocatejangeissler
The European Hematology Association's (EHA) annual congress will start on 14 June 2018 in Stockholm. The co-founder of the CML Advocates Network and member of the EHA European Affairs Committee, Jan Geissler, on behalf of the EuroBloodNET ePAG, presents this webinar on how to get the most of EHA as a CML patient advocate.
Through the webinar you will be able to know more about topics as:
- Types of sessions at EHA and their relevance for a CML patient advocate
- How to set your priorities attending this huge congress.
- How to find and engage with key opinion leaders at the EHA Posters Sessions.
- More about EHA Abstracts: how to find them and how to read them.
2010 11 13 european cme forum jan geissler 1.5jangeissler
This document discusses how patient advocacy groups can strengthen medical education and best practices. It notes that patient groups can provide complementary perspectives to medical professionals by sharing their experiences living with diseases. They can help improve patient-doctor communication and identify unmet patient needs. The document advocates for greater involvement of patient voices at scientific conferences and in educating doctors and nurses, to provide more holistic and patient-centric care.
Patient entrepeneurs, pop up uni, 9am, 3 september 2015NHS England
This document outlines David Festenstein's remarkable recovery from a severe stroke through developing a 7-step program. It describes his background and qualifications in communication before the stroke. After becoming paralyzed on his right side, he kept a journal and was invited to share his recovery approach. He reframed his experience positively and developed 7 distinct steps. This led to opportunities presenting his approach to healthcare professionals and universities. He then created a mobile app and online materials to make his recovery program more widely accessible. His vision is to help others recover from health setbacks and prevent issues in the future.
Talking to the "real world": Communicating Science to General AudiencesKara Gavin
The document discusses the role of communications staff in helping scientists share their research findings with non-expert audiences, noting the general public has low science literacy, distrust of some scientific topics, and gets most science information from entertainment media rather than scientists directly. It provides tips for scientists on how to effectively communicate with the public by using plain language, focusing on relevance, explaining technical terms, and employing good design principles to improve understanding.
This document discusses the benefits and challenges of collaborating with end users in research. It provides examples of engaging stakeholders in health research at the University of Hertfordshire, including those representing mental health, special education needs, LGBTQ issues, and transportation/planning departments. While collaboration brings diverse perspectives, it also faces challenges like ensuring methods are appropriate for all groups. Overall, engaging end users can improve research relevance but requires navigating different priorities and communication styles.
Implementing Patient & Public Involvement in Research: 27.06.2017RDSLondon
This document provides guidance on effective patient and public involvement (PPI) in research. It discusses what PPI is, who can be involved, and how to avoid tokenistic involvement. PPI refers to actively working with patients, caregivers and the public to plan, conduct and disseminate research. Effective PPI ensures research questions reflect patient priorities, methods are appropriate, and findings are disseminated to lay audiences. The document provides examples of how patients can be involved at different stages of the research process and urges researchers to meaningfully incorporate PPI in grant applications.
European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in ...patvocates
"European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in empowering patients on medical R&D": Presentation by Jan Geissler (Twitter @jangeissler) at the Belgian Association of Clinical Research Professionals (ACRP.be) meeting on 25 Oct 2012
1. The document discusses the Database of Uncertainties about the Effects of Treatments (DUETs), which compiles unanswered questions about treatment effects to prioritize future research.
2. It explains that the National Library for Health (NLH) Specialist Libraries are well-positioned to identify uncertainties for DUETs because they comprehensively collect and analyze evidence on various health topics, including systematic reviews.
3. So far, the NLH Skin Disorders Specialist Library has identified over 50 uncertainties about atopic eczema treatments by analyzing systematic reviews, and plans to continue extracting uncertainties from reviews on other skin disorders to further develop the DUETs skin module.
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internetpatvocates
"How Patient (Advocates) discuss Clinical Research on the Internet", presented by Jan Geissler (Twitter @jangeissler) at DIA Clinical Forum in The Hague on 9 Oct 2012.
This document provides summaries from several presentations about driving progress in health care through research supported by the National Institute for Health Research (NIHR) in the UK. The first presentation introduces the NIHR and its role in supporting different types of health care research. The second presentation describes a clinical academic fellowship funded by the NIHR and the research and career development it enabled. The third presentation summarizes a large clinical trial called DRAFFT that compared wire fixation and plate fixation for distal radius fractures and found wires to be as effective and cost less, leading to a change in practice. The last presentation discusses the experience of patients who participate in research and how it can benefit the NHS.
This document provides information about the 5th International Conference and Exhibition on Addiction Research & Therapy that will take place from October 05-07, 2016 in Miami, Florida. It invites addiction experts, professors, researchers, therapists, and students to attend and share knowledge in the field of addiction and treatment. The conference will include keynote lectures, oral presentations, and poster presentations. It highlights sponsorship and exhibitor opportunities and provides registration and accommodation details.
A Community Advisory Board (CAB) is a group of patients who offer their expertise to advise sponsors of clinical research. CABs can advise on overall program development, individual trials, and other aspects beyond research. The same CAB can advise multiple sponsors in the same disease area. This avoids patients being selected by any single sponsor. The CAB agenda and secretariat are driven by patients. CABs provide value by shortening development timelines, improving trial design, and increasing quality and transparency. They can advise on topics like informed consent documents, educational materials, and providing overall feedback on trial protocols. EURORDIS supports establishing CABs and can act as a backend office to help match patients and sponsors.
Data science sig june 23, 2017 introduction, comments and feedbackData Science NIH
This document provides an overview of a webinar titled "Global Perspective on Biobanking and Access to Samples" that took place on June 23, 2017. The webinar featured presentations from experts in biobanking from the United States, Netherlands, Spain, Australia, and other countries. They discussed topics such as finding and accessing biospecimen data internationally, rare disease samples, academic biorepository operations, and improving biospecimen consent processes. Attendees provided positive feedback and questions on incentivizing sharing of rare disease samples and data, locating rare disease specimens, and collaborating with patient groups.
This document provides an overview of a webinar titled "Global Perspective on Biobanking and Access to Samples" that took place on June 23, 2017. The webinar featured presentations from experts in biobanking from the United States, Netherlands, Spain, Australia, and other countries. They discussed topics such as finding and accessing rare disease samples, academic biorepository operations, sample locators, and issues specific to rare disease biobanks. Attendees provided positive feedback and questions on incentivizing sample sharing, improving consent processes, and collaborating to increase sample donations.
This document provides information about an upcoming pediatric cardiology conference to be held September 22-24, 2016 in Las Vegas, Nevada. It includes details about the conference theme, organizers, keynote speakers, sessions, and registration. The welcome message is from Professor Guy Hugues Fontaine, a famous cardiologist, who discusses his background and contributions to the field. The document outlines the conference agenda over the three days, with 15 tracks covering topics in pediatric cardiology, heart surgery, critical care, and more.
The document provides an overview of the International Psoriasis Council (IPC) and their partnership with ILDS and IFPA to execute the Global Psoriasis Atlas project. The IPC is a nonprofit organization comprised of the world's leading experts in psoriasis. They aim to advance knowledge of psoriasis and enhance patient care through research, education, and clinical practice guidelines. The document notes that worldwide prevalence and incidence of psoriasis is poorly understood currently. The Global Psoriasis Atlas project aims to address this through collecting epidemiological data on psoriasis prevalence, burden, and natural history across countries to inform policy and improve care.
Stratified Medicine Public Dialogue Case Study Part 3InvolveReema
Recent advances in science allow for a better understanding of the molecular causes of disease. This enables tests to identify the specific cause of a patient's disease and guide the development of targeted treatments. Stratified medicine divides patients into groups that are likely to respond to particular treatments, representing a shift in how medicine will be practiced.
A public dialogue was conducted over 17 months with over 150 participants to discuss stratified medicine. It identified challenges around clearly defining stratified medicine, implications for patient care and choice of treatments, and potential social issues. The dialogue influenced stakeholders to emphasize personalized rather than stratified medicine and consider access and sensitivities of different groups.
Communicating for a Research InstitutionKara Gavin
Introduction to why universities and other research institutions employ science/medical communicators, and what their role is and how they can coordinate among communicators from different areas of the same institution or across institutions. Also includes slides on public understanding of science.
This document provides information about crafting effective elevator pitches for hospice and palliative care. It defines what an elevator pitch is, discusses when they are used, and provides tips and guidelines for creating successful elevator pitches based on the "Nine C's" framework. Specific examples of elevator pitches for hospice and palliative care are also included that address the benefits of hospice care in nursing homes, the cost effectiveness of hospice and palliative care, and addressing concerns about opioid use for end-of-life patients.
Good practices in patient involvement in HTAEUPATI
Patients and caregivers have unique knowledge and perspectives about living with an illness that can help inform health technology assessments (HTA). Their involvement is recommended at every stage of the HTA process, from topic selection to disseminating results. However, challenges exist in ensuring patient views are representative and not biased. Different countries in Europe are implementing patient involvement in HTA to varying degrees, with some holding training programs and allowing patient groups to initiate research or contribute to appraisals. Ongoing efforts are needed to strengthen patient involvement through resources, training, and embedding it in all new HTA processes.
Nephrology Summit 2018 regards each one of the individuals to go to Annual Congress on Nephrology & Hypertension amidst Dec 06-07, 2018 at Amsterdam, Netherlands which melds brief keynote presentations, speaker talks, Exhibition, Symposia, and Workshops.
If you think selling ice to Eskimos is hard, try selling hospice in 21st century America! Kubler-Ross described us as a “death-denying society” and Freud noted that “each of us, in the unconscious, is convinced of their immortality”. Strategies for successfully engaging such a death-averse populace in discussions about advanced illness and hospice care will be described. Specific tools targeting referring physicians will be demonstrated.
Area of Emphasis: Access, Community Engagement and Marketing
Learning Objectives:
1. Understand the challenges in making the case for hospice to a death-averse audience and identify strategies for overcoming these
2. Describe the value of a professional sales force in increasing access to hospice services
3. Detail several novel approaches to community and physician engagement
Atelier utilisation des données probantes pour la CSU master presentation (1)...SelinaDefor
The document provides information about an upcoming training workshop on using evidence to accelerate progress towards universal health care coverage in Cotonou, Benin from February 17-18, 2022. The workshop objectives are to equip participants with skills in conducting literature reviews and writing policy briefs to contribute to progress towards universal health coverage in Benin. The training will use presentations, group work, and discussions. Sources of information will include participants, faculty from the Institute of Tropical Medicine in Belgium, and the facilitator's experience working in knowledge management in Benin.
Let's Talk Research 2015 - Mel Chapman - Public involvement in the disseminat...NHSNWRD
This document discusses involving members of the public in disseminating research findings. It aims to explain why public involvement is important, what the benefits and challenges are, and how they can be involved. Examples are provided of past studies that engaged the public, such as creating films about a clinical trial from the perspectives of participants, doctors, and advocates. The document also provides links to resources on developing dissemination strategies and training for public involvement.
the need for communication with the public and policy makers for agricultural economists exploting the potential of social media and open access. What can we learn for EuroChoices?
Don't just talk about patient centricity - put meaningful patient engagement ...jangeissler
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1. The document discusses the Database of Uncertainties about the Effects of Treatments (DUETs), which compiles unanswered questions about treatment effects to prioritize future research.
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This document provides an overview of a webinar titled "Global Perspective on Biobanking and Access to Samples" that took place on June 23, 2017. The webinar featured presentations from experts in biobanking from the United States, Netherlands, Spain, Australia, and other countries. They discussed topics such as finding and accessing biospecimen data internationally, rare disease samples, academic biorepository operations, and improving biospecimen consent processes. Attendees provided positive feedback and questions on incentivizing sharing of rare disease samples and data, locating rare disease specimens, and collaborating with patient groups.
This document provides an overview of a webinar titled "Global Perspective on Biobanking and Access to Samples" that took place on June 23, 2017. The webinar featured presentations from experts in biobanking from the United States, Netherlands, Spain, Australia, and other countries. They discussed topics such as finding and accessing rare disease samples, academic biorepository operations, sample locators, and issues specific to rare disease biobanks. Attendees provided positive feedback and questions on incentivizing sample sharing, improving consent processes, and collaborating to increase sample donations.
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Good practices in patient involvement in HTAEUPATI
Patients and caregivers have unique knowledge and perspectives about living with an illness that can help inform health technology assessments (HTA). Their involvement is recommended at every stage of the HTA process, from topic selection to disseminating results. However, challenges exist in ensuring patient views are representative and not biased. Different countries in Europe are implementing patient involvement in HTA to varying degrees, with some holding training programs and allowing patient groups to initiate research or contribute to appraisals. Ongoing efforts are needed to strengthen patient involvement through resources, training, and embedding it in all new HTA processes.
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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!
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