Read about what SHARP does for patients and how patients are engaged in the projects.
Content Table
SHARP is a partnership of patients, clinicians, scientists and the pharma industry with one central aim: to improve lives of people with severe asthma.
The projects are designed with patients, always integrating patients’ perspectives to define aims and study design, with the final aim of improving people with severe asthma lives.
Due to the complex nature of severe asthma, outcomes can only be improved if the correct research is done. To achieve this, people with severe asthma are an equal member of the SHARP team providing their insights, allowing other stakeholders to understand what it is like to live with the condition and where the unmet needs are. This means SHARP research will make a difference to people living with severe asthma.
At SHARP we understand the impact that severe asthma can have on someone’s life and therefore work flexibly with our patient group and offer a range of ways patients can get involved. Patients can be involved at different levels.
The time and level of contribution of the patient is left to patients’ discretion and availability.
There are two patient Chairs who work closely with the two academic Chairs to oversee the overall working of SHARP and help determine the general direction that SHARP is taking.
There are also patient members in the SHARP Steering Committee.
Patients are also more closely involved in studies that are of a special interest to them and then attend all the meetings for that study.
(Extract from the SHARP Newsletter interviews, Issue 6)
I was, and still am, involved in EPAP PAG and the members were asked who was interested being involved in SHARP which was about to be established. I was interested so I got involved. A PAG started and we are allowed to think and talk about research questions and other topics with another stakeholders. The patients’ perspective is very important.
To tackle severe asthma together with doctors, researchers and patients means a lot to me.
Only in collaboration we will get results We put all our views together. Patients know how it feels having severe asthma and doctors/researchers know how it works. Bringing these together will get more and better results about care, daily life, medical treatment, etc.
COVID-19 Project excites me most because it is very actual, and at the start a rather unknown disease. The combination with severe asthma is very interesting but that worries me. It is a new disease, and I am involved from the start with some other patient representatives. Our voices are heard and very useful. I am a full-fledged member of the working group. All the participants are nice and respectful to each other.
Because patients are experienced having severe asthma.
Sometimes patients’ needs differ from what doctors/researchers think. For example: fatigue has a higher place on the agenda.
Bringing the knowledge of science and the knowledge and experience of the patients together is very valuable and important. These yield interesting and sometimes surprising points of view.
The European Lung Foundation set up a Patient Advisory Group (PAG) for people with asthma. The PAG meets once a month. Some of the activities the PAG gets involved in are:
If you are interested in joining SHARP PAG and get involved in research, please email Courtney Coleman.
If you want to get involved in SHARP research, please email Emmanuelle Berret. If you are a patient or patient organisation and want to be part of the PAG, please contact Courtney Coleman.
The SHARP Case Series of Rare Asthma is a programme which aims to provide a better understanding of different disease mechanisms of asthma and bring awareness of specific asthma phenotypes by focusing on very rare asthma cases as well as series of lookalike cases with similar phenotypic features.
Patients and patients’ representatives are invited to be present and attend the session and take part to the discussion. It allows patient to ask their own questions in their own words directly to the clinicians in regard to the presented cases. It provides concrete example on how rare cases are discussed among specialists.
Patients’ feedbacks and comments allow clinicians to integrate the patients’ points of view and major concerns in regards of case examination.
On Saturday 21 January 2023 we held a free online patient conference that focused on severe and difficult asthma.
The conference was co-chaired by a person living with severe asthma and a healthcare professional, with presentations covering the following topics:
Visit the ELF website for more infromation or watch the sessions recordings below.
Lung Facts – the latest data on asthma from the International Respiratory Coalition (IRC)
Lung Facts is a valuable online resource giving the latest epidemiological (who, when and where) and economic (i.e. monetised outcome) data on a range of lung conditions. It is informed by the Global Burden of Disease (GBD) studies and aims to give the latest picture of lung disease by condition and by country.
The tool is a vital data source and advocacy tool that can be used by all stakeholders in the respiratory field, including healthcare professionals, patients, politicians and the media.
Visit the IRC Lung Facts website to find out more.
Visual narratives of people living with severe asthma
The patient’s perspective is often overlooked when considering the benefits of new treatment. Severe asthma has profound effects on many aspects of a patient’s life. These comics were produced by a collaboration of patients, artists and oral history students and tell the patients story in an exciting new way.
Visit the University of Plymouth website to find out more.
