PCRS Patient Reference Group Call for Members
The PCRS Patient Reference Group is an advisory group responsible for providing independent advice and feedback to executive and trustees on how well the Society is performing in relation to the following objectives:
- Embed a patient-centred approach within corporate consciousness of PCRS and all its activities
- Provide a check / balance to ensure PCRS is acting ultimately in patients’ best interests and providing public benefit
Barbara Preston says,
“My experience of life long respiratory disease has followed huge advances in care but my nearly two decades of working with a large Breathe Easy group has shown me that there’s great variation between the services patients receive. I want to help ensure that there is a universal gold standard. PCRS have a key role in working towards this and the Patients Reference Group’s involvement helps ensure that patients’ lived experience is taken into account.”
For respiratory researchers, public and participant involvement is now a requirement for many funding applications. Our Patient Reference Group can help with identifying patients who can advise about research proposals and study documentation. Watch this video to Meet the Patient Reference Group and learn more about how they can support.
The Patient Reference Group would like to invite new applications to join.
Being a member of the PRG means ensuring that the patient voice is heard and represented. Neil Jackson, a PRG Member says,
“As a patient with a respiratory condition caused by a rare genetic disease, I've often felt a bit left out, but being involved with the PRG has meant that I've had many fantastic opportunities to advise, contribute and in some cases even steer the PCRS into truly considering the patient angle on so many levels.. Being on the PCRS PRG is one of the most important things I've done in my life and I'm proud to be involved. I'd urge any patient who has a desire to pass on their vital first-hand knowledge of their own situation, to get involved too."
If you would like to speak with a member of the Patient Reference Group to learn more, please contact email@example.com.