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.
Share experiences of High Flow Nasal Cannula (HFNC) during an acute respiratory failure episode
We are supporting a European Respiratory Society (ERS) Task Force that is developing a clinical practice guideline on: High flow nasal cannula (HFNC) in adults with acute respiratory failure.
We are looking for 2-3 people to help us develop questions for a patient survey on this topic. Individuals will need to have experienced a High flow nasal cannula (HFNC) in a hospital setting resulting from an episode of acute respiratory failure (ARF) or acute respiratory distress syndrome (ARDS). This would probably have been given in an intensive care unit (ICU) where oxygen would have been given to help with breathing.
We want to understand more about the patient experience of receiving HCNC and if possible to also compare with experiences at the same time of receiving conventional oxygen therapy or NiV (non-invasive treatment).
If you, or any contacts you have in your patient organisation or support group, have experience of HFNC and might be interested in getting involved or finding out more please get in touch with me at firstname.lastname@example.org by 21 September 2020.
Please feel free to circulate this opportunity within your networks.
Survey for public and patients about living with chronic lung disease
Cochrane Airways has a survey for members of the public including patients, carers, healthcare professionals and researchers.
They want to know your questions about living with a chronic lung disease. Your questions will help them to decide on new topics for future reviews and to make existing reviews more relevant to you.
Cochrane Airways is part of Cochrane and produces systematic reviews on asthma, COPD, bronchiectasis and other lung diseases.
You can access the survey here https://airways.cochrane.org/news/your-lungs-your-questions-survey
Closing date: 12 September 2019
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.
Opportunity to speak about your experience of pulmonary rehabilitation at ERS international congressELF has an opportunity for a patient to speak about their experience of pulmonary rehabilitation at the ERS Congress in Madrid on the 29th of September 2019.
If you are interested or would like to know more please email email@example.com
Involvement in European Medicines Agency (EMA) activities
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.