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Home » ELF Patient Organisation Networking Day 2021

ELF Patient Organisation Networking Day 2021

Welcome to the ELF Patient Organisation Networking Day 2021! This year’s topic is Digital health: the role of patients and their healthcare teams in the future of healthcare.

The event was recorded, you can find the videos and more information about the day further down this page.

What to expect from the day

On this page you can :
  • Download the programme for the day.
  • Read about our speakers.
  • View posters detailing activities and projects shared by delegates.
  • Browse the delegate list to see who you might want to make contact with.
  • Find discussion questions for the afternoon breakout groups.
You can access the programme here

View Programme

The speaker sessions were recorded and are available to view on our YouTube channel.

Breakout session questions

There were breakout sessions that discussed the following questions:

  1. How much are you, and/or your patient organisation, currently
    involved in digital health solutions?
  2. Which digital solutions do you think are most important for
    patients right now, and why?
  3. What are the areas where you think digital solutions can best
    support the unmet needs/gaps for respiratory patients going
    forward?
  4. What are the biggest challenges that we face with digital
    technology in health, and how can we deal with them?

Watch the videos from the day

Professor Anita Simonds, President, European Respiratory Society: Where are we now? Learning from the ERS Presidential Summit 2021 on digital respiratory medicine: realism v futurism.

Mr Pascal Lardier, The Healthcare Information and Management Systems Society (HIMSS): How can patient organisations play an active role in next generation health and research?

Valeria Ramiconi, EFA (The European Federation of Allergy and Airways Diseases Patients’ Associations): The Asthma and COPD Patient’s Digital Journey

Sandra Karabatić, President of Jedra and Andreja Šajnić, ERS Nurses Group Chair and member of Jedra, the Croatian Association for Lung Cancer Improving communication and providing patient support during the COVID-19 pandemic and earthquake in Zagreb

Elise Lammertyn, Head of Research, CF Europe: Enhancing Real World Data in cystic fibrosis: supporting our member patient organisations

Mindy Buchanan, Director of Patient Programs, Foundation for Sarcoidosis Research (FSR): Sharing our strategy to support communities digitally in promoting mental health and wellbeing

Lucy Dixon, Chair, PCD Support UK: Our experience of NHS Spirometry at home and how we are adapting to future digital communication

Professor Marc Humbert, ERS President Elect

The presentation by Sandra Karabatić, President of Jedra and Andreja Šajnić, ERS Nurses Group Chair and member of Jedra, the Croatian Association for Lung Cancer: Improving communication and providing patient support during the COVID–19 pandemic and earthquake in Zagreb will be available soon.

Thank you

We want to say a huge thank you to

ELF Day planning group –  Armando Ruiz (FENAER), Shane Fitch (Lovexair Foundation) and Mikaela Odemyr (Astma och Allergiförbundet; ELF Patient Advisory Committee Chair) who gave up their time to help us plan the theme, speakers and details for this year’s event.

 

and to our

Breakout discussion Facilitators – Stefano Pavanello, Gergely Meszeros, Armando Ruiz, Shane Fitch and Mikaela Odemyr

 

and finally
To everyone who submitted a poster for this event – you can view them below.

Hosts

Kjeld Hansen - profile image
Kjeld Hansen
ELF Chair

kjeld.hansen@europeanlung.org

Pippa Powell - profile image
Pippa Powell
Director

+44 1142672874

pippa.powell@europeanlung.org

Speakers

Professor Anita Simonds - profile image
Professor Anita Simonds

Prof Anita Simonds is currently President of ERS. She was previously ERS Education council chair and chief editor of ERJ Open Research. Her clinical and research interests are in Sleep medicine, ventilatory support, digital pathways, pandemic medicine and palliative care. She is an honorary consultant respiratory physician in London.

Pascal Lardier - profile image
Pascal Lardier

Vice President – International Events & Media Content, HIMSS, Spain.
Pascal is a digital health strategist and connector. He was appointed Vice President for international content across events and media at HIMSS in 2018. Before that, Pascal promoted grassroot innovation movements around the world for over 10 years as Health 2.0’s International Director - mentoring innovators, connecting stakeholders, linking startups with investors and customers, developing innovation adoption frameworks for pharma and insurance groups, and organising international matchmaking and hackathon events. He has also been part of several EU-funded projects focused on the digital health vertical, including the GET and eHealth Hub projects, where he was specifically in charge of accelerating investments and commercial traction for digital health solution providers in Europe. As a patient and caregiver, he is also passionate about extending the reach of citizen’s empowerment and investment in their own health.

Andreja Šajnić - profile image
Andreja Šajnić

Andreja Šajnić is the Chair of the ERS Group 9.3 for Respiratory Nurses and member of the Croatian Association for patients with Lung Cancer Jedra

She is based in the Department for Respiratory Diseases Jordanovac, University Hospital Center Rebro in Zagreb, Croatia.

She is active member and patient representative at Croatian Association for Patients with Lung Cancer Jedra
from 2016.

She actively participated in various workshops and conferences with goal to enhance patient support and delivery of care. Her recent enrolment was at Patient view round table at COVID-19: State of the Art – DRAGON IMI project.

Sandra Karabatić - profile image
Sandra Karabatić

Sandra Karabatić, MScN, BSN RN, PhD student. President of the Croatian Association for patients with Lung Cancer Jedra. Head Nurse Thoracic Oncology Unit, Dept. for Respiratory Diseases Jordanovac, University Hospital Center Zagreb, Croatia. She is founder Croatian Association for Patients with Lung Cancer Jedra, 2007. She organized multiple health campaigns with goal of raising public awareness for lung cancer and other respiratory diseases.

Professor Marc Humbert - profile image
Professor Marc Humbert

President-Elect of the European Respiratory Society, Marc Humbert, MD, PhD, is Professor of Respiratory Medicine, Vice Dean for Research and Director of the Inserm Unit 999 at the Université Paris-Saclay Faculty of Medicine in Le Kremlin-Bicêtre, France. He is the Director of the Department of Respiratory and Intensive Care Medicine, French Pulmonary Hypertension Reference Centre and Severe Asthma Clinic, Hôpital Bicêtre, Assistance Publique Hôpitaux de Paris, France. Marc Humbert was the Chief Editor of the European Respiratory Journal from 2013 to 2017 and he is currently Section Editor in charge of Pulmonary Vascular Medicine. He is a Fellow of the European Respiratory Society (FERS Foundation Fellow) and has received several distinctions including the Cournand Lecture Award, the Rare Disease Award of the Fondation de France, and the ERS Award for Lifetime Achievement in Pulmonary Arterial Hypertension. Since 2017, Marc Humbert is the vice-coordinator of the European Reference Network for rare and low prevalence respiratory diseases (ERN-LUNG). Clarivate Analytics listed Marc Humbert as one of the world's highly cited researchers in the field of Clinical Medicine.

Valeria Ramiconi - profile image
Valeria Ramiconi

In 2020 Valeria joined EFA to lead the management and implementation of EFA’s projects, including the EU funded ones. Valeria has 10 years of experience in the field of public health and international development, both in NGOs and for-profit companies. Her commitment is to ensure that the patients’ perspective is always at the centre of all EFA’s projects and that patients continue being the driver of EFA’s activities.

Elise Lammertyn - profile image
Elise Lammertyn

Elise Lammertyn (11 October 1990, Ostend, Belgium) holds a PhD degree in Biomedical Sciences (2017, KU Leuven, Belgium) awarded to her for her fundamental scientific research in the cystic fibrosis field. In 2018, she started working for CF Europe as Head of Research and for the Belgian CF Association (Mucovereniging vzw/Association muco asbl) as Scientific Officer. On behalf of both organisations, she strives for patient-centred fundamental and clinical research that is tailored to the patients’ needs. This is facilitated through initiatives like the CF Community Advisory Board or by having patient experts reviewing scientific research proposals.

Mindy Buchanan - profile image
Mindy Buchanan

Mindy joined the Foundation for Sarcoidosis Research in 2019. As Director of Patient Programs, she works to increase FSR’s engagement with individuals living with sarcoidosis and their loved ones through our education and advocacy programming. Mindy also works to improve FSR’s research engagement strategies and educational programming surrounding the FSR Patient Registry.

With experience that includes working in both academic medical center and non-profit settings, she brings an in depth understanding of how research informs and elevates supportive and advocacy programming.

Lucy Dixon - profile image
Lucy Dixon

Lucy Dixon is a rare disease advocate and volunteers as Chair of PCD Support UK. Born with the rare, multisystem disease called Primary Ciliary Dyskinesia (PCD), she is an ‘expert patient’ and is passionate about patient empowerment, transparency and accessibility. Professionally, Lucy works in health research and sits on the board of the BEAT-PCD Clinical Research Collaboration Advisory Board, Genomics Partnerships Wales Patient and Public Sounding Board, and is a Public Contributor for the EVITE Immunity study (part of the National Core Studies Immunity Programme). In her spare time she enjoys live music, learning new languages and being active outdoors!

Posters

Rapid Access Rehabilitation (RAR) after Exacerbations of COPD: A Qualitative Study
Rapid Access Rehabilitation (RAR) after Exacerbations of COPD: A Qualitative Study

Rapid Access Rehabilitation (RAR) after Exacerbations of COPD: A Qualitative Study

Ana Oliveira is the recipient of the ERS/ELF Travel Grant for Best Abstract in Patient Centred Research 2021.

Rehabilitation after exacerbations of chronic obstructive pulmonary disease is beneficial, but its feasibility is questionable. Feasibility is increased by stakeholder involvement throughout program development. We explored the perspectives of different stakeholders towards a rapid access rehabilitation (RAR) program after exacerbations. Interviews were conducted with 3 patients, 10 healthcare professionals and 3 policymakers. Pre-RAR considerations were clear eligibility criteria and management priorities. It was suggested that RAR should begin immediately after discharge and its frequency/duration depended on the RAR setting. Tailored exercise and education were prioritized. Outcomes included exacerbations, exercise, functionality, knowledge and mental wellbeing. Referral and uptake optimization of the RAR included standardization of the referral process and increasing awareness about RAR programs. Partnership among HP and care settings was deemed essential for the RAR sustainability and the need for a coordinator to manage the communication process was highlighted. COVID adaptations through remote access were mentioned.

Contact: Ana Oliveira (Ana.Oliveira@westpark.org) and Roger Goldstein (Roger.Goldstein@westpark.org)

View poster
Empowerment guides for patients with COPD, revised by experts, patients & caregivers
Empowerment guides for patients with COPD, revised by experts, patients & caregivers

Empowerment guides for patients with COPD, revised by experts, patients & caregivers

Many professional health care societies, recognize the need to empower patients and their families to use more rigorous processes to ensure health care recommendations by the best available evidence.

Therefore, there is a need for efficient use of resources and international collaboration to guideline development, implementation, and adaptation resulting in better understandable and “patient friendly”content.

APEPOC (Spanish National COPD Patient Association) in collaboration with GAAPP (Global Allergy & Airways Patient Platform) and with the scientific review of CIBERES (multidisciplinary research network for respiratory diseases) have created 6 guides supported by scientific evidence and international standards for the COPD management as a tool that allows COPD patients, their families and caregivers to make the best decisions about their disease.

These guides are the result of the “Research Action Participation” methodology and the “patient value proposition”, which focus on self-management of the disease and preventing its progression to achieve better life quality and longer life expectancy.

APEPOC, Spanish COPD patient association

Contact: gerencia@apepoc.es and nicole.hass@european-excellence.es

View poster
Patient and Public Involvement in digitally-related projects within the IMP2ART research programme
Patient and Public Involvement in digitally-related projects within the IMP2ART research programme

Patient and Public Involvement in digitally-related projects within the IMP2ART research programme

IMPlementing IMProved Asthma self-management  as RouTine (IMP2ART) is a programme of research that is developing and evaluating an implementation strategy to support primary care practices to deliver supported self-management for people with asthma.  Patient and Public Involvement (PPI) is central to making sure we get things right for those living with asthma.  Working with PPI colleagues throughout the IMP2ART programme of work ensures our research is carried out with patients for patients. Our PPI colleagues are important members of the IMP2ART team and our poster illustrates some examples of how PPI support and advice is helping us deliver IMP2ART.

Asthma UK Centre for Applied Research, The University of Edinburgh

Contact: Hilary.pinnock@ed.ac.uk

View poster
Zoom Relief: International Breathe Easy
Zoom Relief: International Breathe Easy

Zoom Relief: International Breathe Easy

noun: relief   a feeling of reassurance and relaxation following release from anxiety or distress. reassurance, consolation; comfort, solace, relaxation, the alleviation of pain, discomfort, or distress.

 

“OK, OK, I know that Zooms do not reach the digitally excluded.

but substantial numbers of lonely members were helped during covid isolation and are now helped by remote consultations.

 

We will carry on keeping in touch however possible

Tess Jelen”

The UK based “International Breathe Easy Zoom” was born January 2021. Like most BE groups they have speakers and support information, followed by questions and chat. This friendly group usually finds something to laugh about too. Most members are from the UK, Canada, and the USA, but they would welcome more Europeans to join.

Derek also runs a Facebook International COPD support group called ‘We Strive to Breathe Easier’, with over 1500 members from many parts of the world.

Breathe Easy BLF Support Groups

Contact: Breatheasywestminster@talktalk.net

View poster
Access to healthcare for PH patients through the COVID-19 pandemic
Access to healthcare for PH patients through the COVID-19 pandemic

Access to healthcare for PH patients through the COVID-19 pandemic

Findings from research that is part of the project “Patient response against COVID-19” conducted in March 2021

Bulgarian Society of Patients with Pulmonary Hypertension

Contact: bgspph@gmail.com

View poster
Digital health at the National Aspergillosis Centre
Digital health at the National Aspergillosis Centre

Digital health at the National Aspergillosis Centre

Online resources and support about aspergillosis.

National Aspergillosis Centre, Manchester University NHS

Contact:  elizabeth.bradshaw@mft.nhs.uk and graham atherton@mft.nhs.uk

View poster
How did COVID-19 change communications at PCD Support UK?
How did COVID-19 change communications at PCD Support UK?

How did COVID-19 change communications at PCD Support UK?

We are the UK’s dedicated charity supporting those affected by Primary Ciliary Dyskinesia (PCD), championing vital research into this rare disease since we began over 30 years ago. In the UK, all adults, and some children with PCD are considered clinically extremely vulnerable to COVID-19 and were advised to shield (isolate) throughout much of 2020 and 2021. This poster outlines how the pandemic forced us to change our charity into a digitally focussed organisation: we’ve moved our events online, improved our social media content, and built a fantastic new website! In doing so, we realigned our values into a friendly, approachable, inclusive and expert organisation that serve our community’s needs.

PCD Support UK

Contact: comms@pcdsupport.org.uk

View poster
O2KIDS IN UKRAINE A campaign aimed at raising both money and awareness for PH sick children
O2KIDS IN UKRAINE A campaign aimed at raising both money and awareness for PH sick children

O2KIDS IN UKRAINE A campaign aimed at raising both money and awareness for PH sick children

A campaign aimed at raising both money and awareness for PH sick children.

PHURDA

Contact: fond.poryatunok@gmail.com

View poster
PH Care COVID Survey
PH Care COVID Survey

PH Care COVID Survey

An International Patient Survey on the Care for Pulmonary Hypertension Patients during the Early Phase of the COVID-19 Pandemic.

PH Europe

Contact: g.meszaros@phaeurope.org

View poster
Pulmonary Fibrosis Trust
Pulmonary Fibrosis Trust

Pulmonary Fibrosis Trust

Raising awareness of pulmonary fibrosis and providing personal support to all those affected.

Pulmonary Fibrosis Trust

Contact: elizabeth.nichols@execbs.com

View poster
The UK's leading Sarcoidosis Charity 
The UK's leading Sarcoidosis Charity 

The UK's leading Sarcoidosis Charity 

SarcoidosisUK have four main goals – to provide quality information, to provide meaningful support, to increase awareness, and to fund research towards a cure. We have funded a significant piece of research into understanding more about sarcoidosis each year for the past 5 years. We are going to fund more research this year, next year, and every year until we have found a cure for sarcoidosis. We also have different  support options so you can choose what works best for you; you can speak to a specialist nurse, you can meet others affected by sarcoidosis at one of our support groups or chat virtually in our online forums. None of our work is possible without donations. We receive no government money and are 100% reliant on your generosity. Any donation, big or small, makes a huge difference to our ability to help others and fund a cure. Please consider donating today!

SarcoidosisUK

Contact: info@sarcoidosisuk.org

 

View poster

Delegates

Filippo Martone - profile image
Filippo Martone
ACSI - Amici Contro la Sarcoidosi Italia

President
presidenza@sarcoidosi.org

Gianluca Ziosi - profile image
Gianluca Ziosi
ACSI - Amici Contro la Sarcoidosi Italia

Vice President
gianluca.ziosi@gmail.com

Debra Chand - profile image
Debra Chand
Action for Pulmonary Fibrosis

National Support Manager
debra@actionpf.org

Tracy Jackson - profile image
Tracy Jackson
Asthma UK Centre for Applied Research

Patient and Public Involvement Lead
tracy.jackson@ed.ac.uk

Mikaela Odemyr - profile image
Mikaela Odemyr
Astma och Allergiförbundet / ELF Patient Advisory Committee Chair

Vice President/ Chair
mikaela.odemyr@astmaoallergiforbundet.se

Betty Frankemolle - profile image
Betty Frankemolle
Dutch Lungfoundation (Longfonds)

Patient representative
bettyfrankemolle@ziggo.nl

Colette Armitage - profile image
Colette Armitage
ELF COVID-19 PAG

Volunteer

Eleni Stamouli - profile image
Eleni Stamouli
Hellenic Association IPF

Vice President
stamouli63@gmail.com

Dr Vitalii Poberezhets - profile image
Dr Vitalii Poberezhets
National Pirogov Memorial Medical University, Vinnytsya, Ukraine.

Chair of Group - 01.04 - m-Health/e-health of the European Respiratory Society; Assistant professor of the Department of Propedeutics of Internal Medicine
poberezhets_vitalii@vnmu.edu.ua

Catia Cilloniz - profile image
Catia Cilloniz
NEUMOAI -Association for support of  patients with pneumonia

President
catiacilloniz@yahoo.com

Isabel Saraiva - profile image
Isabel Saraiva
Patient volunteer

Proud Volunteer in the field of Respiratory Health. Proud Grandmother of seven. Avid Reader.
saraiva49@gmail.com

Gergely Meszaros - profile image
Gergely Meszaros
Hungarian Pulmonary Hypertension Association
Armando Ruiz - profile image
Armando Ruiz
Spanish Federation of Allergy and Airways Diseases Patients’ Associations (FENAER)

Global Relationships Manager
international@fenaer.es

Stefano Pavanello - profile image
Stefano Pavanello
Unione Trapiantati Polmone - Padova ODV

President
s___pier@hotmail.com

Hilary Pinnock - profile image
Hilary Pinnock
University of Edinburgh

General Practitioner and Professor of Primary Care Respiratory,   Head of Assembly 1 of the ERS
hilary.pinnock@ed.ac.uk

Chris Knoet - profile image
Chris Knoet
Sarcoidose.nl

Volunteer
chrisknoet@kpnmail.nl

Katie Dexter - profile image
Katie Dexter
PCD Support UK

Communications Officer
comms@pcdsupport.org.uk

Prof. Dr. Ghulam Mustafa - profile image
Prof. Dr. Ghulam Mustafa
Helping Hands Foundation / Nishtar Medical University, Multan, Pakistan. 

Chairman / Professor of Paediatrics
Mustafa017@hotmail.com

Lila Martínez Ucha - profile image
Lila Martínez Ucha
Lovexair Foundation

Projects & Communications Director
lilamartinez@lovexair.com

Dr Adela Maghear - profile image
Dr Adela Maghear
European Cancer Patient Coalition (ECPC)

Senior EU Affairs Officer
adela.maghear@ecpc.org

Shaun Clayton - profile image
Shaun Clayton
PHA UK

Director of Membership Support
shaun@phauk.org

Nettie Burke - profile image
Nettie Burke
Cystic Fibrosis Australia

CEO
nettieb@cfa.org.au

Sandra Gori - profile image
Sandra Gori
Associazione Italiana Bronchiettasie

AIB – International Relations
iamsandragori@gmail.com

Mayka Overgaauw - profile image
Mayka Overgaauw
Sarcoidose.nl

Board member
secretaris@sarcoidose.nl

Tonya Winders - profile image
Tonya Winders
COVID-19 PAG member

Country of Residence: USA

Andrea Gonzales - profile image
Andrea Gonzales
Lovexair Foundation

Latam Network Coordinator

Oksana Kulish Skåra - profile image
Oksana Kulish Skåra
PHURDA (Pulmonary Hypertension Ukrainian Rare Disease Association) and CF "Sister Dalila"

President
kulish609@gmail.com

Uliana Malofi - profile image
Uliana Malofi
PHURDA (Pulmonary Hypertension Ukrainian Rare Disease Association)

International project manager
ulyana.malofiy@gmail.com

Frank Willersinn - profile image
Frank Willersinn
Alpha-1 Plus asbl (Belgium)

President
info@alpha1plus.be

Markaya Henderson - profile image
Markaya Henderson
European Federation of Allergy and Airways Diseases Patients’ Associations (EFA)

Projects and Patient Engagement Officer
Markaya.henderson@efanet.org

Tessa Jelen - profile image
Tessa Jelen
Westminster British Lung Foundation Support Group

Chair
Breatheasywestminster@talktalk.net

Yin Ting Lam - profile image
Yin Ting Lam
Institute of Social and Preventive Medicine (ISPM), University of Bern, Switzerland

Paediatrician, PHD candidate
yin.lam@ispm.unibe.ch

Randel Plant - profile image
Randel Plant
Alpha-1 Foundation

Global Director, Director of Research Programs
rplant@alpha1.org

Giancarlo Pineiro - profile image
Giancarlo Pineiro
Alpha-1 Foundation

Communications & Global Coordinator
gtpineiro@alpha1.org

Peter Bryce - profile image
Peter Bryce
The Pulmonary Fibrosis Trust 

Chair
Peter.bryce@pftrust.org

Ayse Kora Akersoy - profile image
Ayse Kora Akersoy
PAHSSc Turkey

Foreign Relations
aysekora@gmail.com

Liam Galvin - profile image
Liam Galvin
Patient Advisory Committee member

Location: Ireland

Graham Atherton - profile image
Graham Atherton
National Aspergillosis Centre

Communications Manager
graham.atherton@mft.nhs.uk

Beth Bradshaw - profile image
Beth Bradshaw
National Aspergillosis Centre

Medical Writer
elizabeth.bradshaw2@mft.nhs.uk

Jacqueline Tuxen Wissing - profile image
Jacqueline Tuxen Wissing
ELF Aspergillosis PAG

Member
j@tuxenwissing.dk

Daniela Méndez Guerrero - profile image
Daniela Méndez Guerrero
Spanish Alpha1 Patient’s Association

Director of the Technical Secretariat

Elena Goyanes - profile image
Elena Goyanes
Spanish Alpha1 Patient’s Association

Vice-president and Secretary of the Board of Directors
secretaria@alfa1.org.es

Danijela Pešić - profile image
Danijela Pešić
PHA Europe

President
danijela@pesic.rs

Nicole Hass - profile image
Nicole Hass
APEPOC (Spanish COPD patient association)

Spokesperson
gerencia@apepoc.es

Janette Rawlinson - profile image
Janette Rawlinson
British Thoracic oncology group, WM Cancer Alliance EAG and Patient advocate EAG, NCRI consumer forum and LC advanced disease subgroup, member ELF patient advisory group and United PAG

Advocate/patient representative
janette.rawlinson@blueyonder.co.uk

Natalia Maeva - profile image
Natalia Maeva
Bulgarian Society of Patients with Pulmonary Hypertension

President
bgspph@gmail.com

Irantzu Muerza Santos - profile image
Irantzu Muerza Santos
ASMABI association (Association to support people affected by Asthma in Bizkaia)

President
asmabi.asoc@gmail.com

Derek Cummings - profile image
Derek Cummings
International Breathe Easy

Chair
cummingsderek1@sky.com

Liliya Gentet - profile image
Liliya Gentet
FFAAIR

Member of CA
ligentet@gmail.com

Isabel Pinto - profile image
Isabel Pinto
Associação Alfa 1 de Portugal (AA1P) 

Board member
isabelp@aa1p.pt

ELF Team

ELF Team

Visit the ELF team page

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