This section provides details of opportunities that arise for patient participation across Europe. Please visit this page regularly or sign up to our LinkedIn group or the Facebook group to receive these updates as they arise.
Improving treatment and care for people with severe asthma in Europe
ELF is involved in a number of projects focusing on severe asthma, and would like to invite patients, parents and carers to get involved. Bringing together healthcare professionals, researchers and patients, these projects aim to improve treatment and care of people with severe asthma, and increase the level of research across Europe.
By getting involved, people affected by severe asthma will help to make sure the projects address the issues which matter to patients and will deliver results for patients now and in the future.
The current severe asthma projects are:
DEVELOPING INTERNATIONAL GUIDELINES ON THE DEFINITION, EVALUATION AND TREATMENT OF SEVERE ASTHMA
These guidelines will give healthcare professionals evidence-based guidance on the best way to diagnose, treat and manage severe asthma.
INCREASING THE NUMBER OF CHILDREN WITH SEVERE ASTHMA WHO PARTICIPATE IN CLINICAL TRIALS
This project, which brings together doctors, patients and representatives from the pharmaceutical industry, aims to increase the number of treatments available for children with severe asthma. By linking up hospitals and research centres across Europe, this project will make it easier to do clinical trials and get treatments to children with severe asthma much more quickly.
ESTABLISHING A NETWORK OF EUROPEAN ASTHMA RESEARCH CENTRES
This project will create a collaborative, cross-border network of doctors, researchers and patients to tackle severe asthma. By establishing a database (patient registry) of people with severe asthma this project aims to increase the level of research, and deliver new treatments to patients faster. This is the first project of its kind with a patient chair, indicating the level of commitment to working in partnership with people with severe asthma.
To support these projects, ELF would like to establish a patient advisory group (PAG), formed of people with severe asthma and parents/carers of children with severe asthma from across Europe.
PAG members can come from any European country and we aim to recruit a broad range of representatives from across Europe. The working language of the PAG will be English.
Members can nominate themselves to focus on or sit on the boards of specific projects.
As a member of the severe asthma PAG you would get involved in one or more of the above projects, depending on your area of interest. You would be asked to comment on all aspects of the projects’ aims, design and delivery from the perspective of someone affected by severe asthma and will help to make sure the projects deliver the results needed for patients. The group will meet regularly by teleconference and also communicate by email. Some meetings will also take place face to face within Europe.
ELF would like to hear from you if you have:
- Experience of severe asthma, as a patient, parent or carer
- An interest in improving the treatment for severe asthma
- An interest in working with other patients and professionals from across Europe
- The ability to communicate in English (spoken and written)
- Access to a computer and the internet
Any costs for getting involved in the PAG, such as telephone calls, travel and accommodation costs will be covered, in line with our expenses policy. Please note that this is a voluntary role and we are unable to pay for your time.
HOW TO GET INVOLVED
If you are interested in getting involved or would like to find out more, please email Courtney Coleman, ELF patient involvement and engagement.
Please get in touch before Friday 7 July, 2017.
People with chronic cough wanted for patient advisory group
THe European Lung Foundation (ELF) has a Patient Advisory Group (PAG) made up of people living with chronic cough who share their perspectives to help improve the diagnosis and treatment of chronic cough.
We want to expand the PAG to include more people from across Europe. We currently have good representation from people living in the UK and would like to involve more people living in other European countries.
WE WOULD LIKE TO HEAR FROM YOU IF YOU:
- Are over 18 and have experience of living with a chronic cough that is not linked to a specific diagnosis. A chronic cough is a cough that does not get better after a period of treatment and has lasted for more than 8 weeks.
- Are resident in a European country (outside of the UK).
- Can communicate in English (spoken and written).
- Are interested in improving the treatment of chronic cough across Europe.
- Are willing to share your perspective on living with a chronic cough.
- Have access to a computer and the internet.
PROJECTS YOU CAN GET INVOLVED IN:
- A European Respiratory Society Task Force that is developing clinical practice guidelines for the diagnosis and treatment of chronic cough. A group of doctors from across Europe aim to produce recommendations for healthcare professionals on the best way to treat and care for people based on published research. They want to make sure that the needs and experiences of patients are considered as part of these recommendations.
- A European research network (a Clinical Research Collaboration) called NeuroCough (New Understanding in the Treatment of Cough) which aims to advance science and research about chronic cough. It aims to create a registry of specialist cough clinics and of chronic cough patients to get involved in clinical trials and to produce online information for people with chronic cough.
As a member of the cough PAG, you will be asked to share your perspective on aspects of the projects above, such as the aspects of chronic cough that impact most on your daily life, your thoughts on treatment and any side effects from medications, and aspects of cough that may not have previously been studied.
The group will meet by teleconference and communicate by email. Representatives from the group may also be invited to some face-to-face meetings in Europe.
Any costs for getting involved in the PAG, such as telephone calls, travel and accommodation costs will be covered in line with our expenses policy. Please note that this is a voluntary role, and we are unable to pay for your time.
HOW TO GET INVOLVED
If you are interested in getting involved or would like to find out more, please email Jeanette Boyd, ELF patient projects by Friday 23 November.
Members of expert panel wanted to research project on sleep apnoea
An International e-Delphi exercise to define the components of a clinical review of people using CPAP therapy
Research team: Phyllis Murphie, Dr Stuart Little, Professor Brian McKinstry, Professor Hilary Pinnock.
As part of my PhD at the Usher Institute of Population Health Sciences and Informatics at the University of Edinburgh we are conducting an international e-Delphi study among experts in Sleep Medicine and people with sleep apnoea. The general aim of our study is to gain a consensus on the clinical content and frequency of review of people using CPAP therapy.
We would like to invite you to participate in this e-Delphi study as a member of our expert panel. Participation will not be time-consuming, and will simply involve completing three short survey forms over an interval of about 4-6 months. The details of the study are explained in the Participant Information Sheet. Click here for the participant information sheet.
If you have any questions please contact me at (firstname.lastname@example.org) or telephone number below.
If, after reading the participant information sheet you would like to participate in this e-Delphi consensus process, please reply contact me at: email@example.com and I will send an electronic consent form.
With kind regards
Respiratory Nurse Consultant/ PhD candidate
NHS Dumfries and Galloway/Scotland and
Centre for Population Health Sciences, The Usher Institute of Population Health Sciences and Informatics, The University of Edinburgh.
Tel: 00 44 1387241860
Case studies wanted from people experiencing medicine shortages
The European respiratory Society (ERS) is looking for people with a long-term condition to contribute their personal stories as case studies for a European health research project called COST Action. COST is the longest-running European framework supporting trans-national cooperation among researchers, engineers and scholars across Europe. This project is looking specifically at medicines shortages and the effect on a patient’s life and/or condition.
We are interested to hear from people who receive long-term medication for a condition, but have been unable to get hold of their regular medicine for a period of time. Please contact Kerstin.Morrison@europeanlung.org if you are interested in contributing to a case study.
The deadline is 31 March.
Questionnaire on Patient Opinions of Clinical Trials
Would you be interested in voicing your opinion about clinical trials and make a mark on the future practice of clinical trial research?
Patient opinion is a key consideration, so please help us understand your views by completing this short questionnaire which should not take more than five minutes of your time. Through the questionnaire you will also be given the chance to participate in further research should you wish to, in a focus group where these issues can be further explored.
This questionnaire has been created by researchers in the Department of Mathematics and Statistics, Lancaster University, solely for research purposes. If you have any queries please email Despina Vasileiou at firstname.lastname@example.org.
To participate in the survey please click here: https://eu.qualtrics.com/SE/?SID=SV_eX2PokH7lJr2wSN
Do you have experience of COPD and want to help design a new European research study?
ELF are involved in a funding application to improve the diagnosis and treatment of COPD across Europe. We would like to recruit one person with COPD to join the team that is designing the project, to make sure it addresses the issues which matter to patients. If you would like to find out more or are interested in getting involved, please contact Courtney Coleman: email@example.com
Involvement in European Medicines Agency (EMA) activities
Summer Training for Young Patients Advocates
The European Patient’s Forum (EPF) is offering an opportunity for young people with a chronic long-term condition aged 18-30 to attend a summer training school for young patient advocates. The training is leadership programme aimed at contributing to building leadership capacities of young patients to get involved in patient organisations and advocacy work in their respective countries in a meaningful way.
The summer school takes place in Vienna, Austria on 3-5 July.
The deadline for applications is 3 February, 2017. Click here to find out more about the summer school, the eligibility criteria and how to apply.
Patient representatives wanted for stakeholder discussion
eTRIKS, an Innovative Medicines Initiative (IMI) project, is looking for 10-12 patient representatives to take part in an event that brings stakeholders together to discuss the value of research data. eTRIKS provides advice, open source platforms and training to translational research projects and wants to reduce the effort needed to integrate, explore and preserve your data.
Across Europe health researchers are collecting more and more information about diseases and treatments and how they impact individual patients. Often data is stored in incompatible, inaccessible systems that make it difficult or even impossible to reuse the information to improve patient outcomes. The challenges to using the data to their full value may be both practical and ethical.
Sharable, or standardised integratable data, is valuable data. In this form data is compatible with all other standardised forms of data, which then enables broader and richer analysis. The challenges that stop data becoming integrateable are the non-adoption of data standards, national legislation and organisational policy and a lack of understanding of the importance to share data.
eTRIKS is looking to inform medical researchers about the value of data and to provide practical advice on making data more valuable through ethical sharing. To do this they want to bring together patients, eTRIKS expertise and supported project representatives, to gain a broader insight into the value of data, data sharing and data reuse.
The event details are as follows:
Date: October 20th 2016
Venue: The European Parliament
Host: MEP/IMI/eTRIKS /BioSci Consulting
Stakeholder invitees: Patients, Patient Organisations, MEP’s, Funding bodies, Clinical Researchers, Data Managers or processors, policy makers
Facilitators: BioSci Consulting
Attendee details: 20-25 attendees plus 4 or 5 facilitators. Attendees by invite and application
Venue request: Room to seat 30 with sufficient space for discussion groups at table or in small clusters of 5 + facilitator
Timing: 2.5 hours session followed by networking space with refreshments, from 10.00-12.30 (CEST) with refreshments after
Catering: Light refreshments (Coffee/Tea/Juice/Sandwiches/Fruit at lunchtime, Coffee/Tea/Juice to start).
If you are interested please contact Kerstin.Morrison@europeanlung.org by 30 September 2016
Consumer reviewer required for a new Cochrane Overview
Physical activity and exercise for chronic pain in adults: an overview of Cochrane reviews
Cochrane requires the input of a Consumer Reviewer for their new overview, Physical activity and exercise for chronic pain in adults: an overview of Cochrane reviews. They will send a checklist and further information along with a copy of the overview to anyone interested. To register your interest click here.
There are vacancies for one/two reviewers.
UK opportunity for young people with JIA
This activity has been developed by Simon Stones from the University of Manchester, UK, to understand if an interactive activity helps young people with JIA, aged 16 to 25, to learn more about their condition, rather than information booklets or websites with lots of words. The activity will show the different types of JIA that exist, the treatments for young people with JIA, and some tips on how to be healthy, whilst living with JIA. Click here to find out more.
UK opportunity for children with cerebral palsy
The UCL is currently recruiting participants for our Functional Vision Screening Project, FunViS and Eye Pointing Classification, eyePoint. If you have received an information pack and would like to sign up your child for this project, please visit the Take Part page.
Patient reviewers for the BMJ
The British Medical Journal (BMJ) launched a new patient partnership strategy in 2014. As part of this, patients, carers and other patient advocates from across the Europe and the globe now act as patient reviewers of papers to help increase the relevance and usefulness of the research and comment papers the BMJ publishes.
The BMJ would like to invite you to join their database of patient reviewers. No expertise in scientific peer review is needed – it is the experience and insights of living with illness, chronic conditions and caring for and advocating for them which counts.