PPI 2015 Unit II

Partner readings

For partner readings, please refer to the Resource list on the Moodle course homepage (from the menu list on the left-hand side of the page).

Topics

• Why do patients get involved in research?
• One patients experience of being involved in research

Introduction

Why do patients and the public get involved? What are the rewards and challenges? What do patients who get involved hope to achieve? Generally, people who get involved are both altruistic and interested in learning more about research. Often, they have a long-term condition and are keen to contribute to research which helps others with that condition by improving health and healthcare. Sometimes they have taken part in a clinical trial as participants and want to ‘give something back’. Many bring life skills they are keen to use: they might be retired, unemployed, or students and looking for a volunteering opportunity, where they can gain new skills while making a contribution to a worthwhile activity. Others are motivated by a wish to have a voice, influence process and make sure researchers are grounded in reality.

It can be a rewarding experience if they are listened to, treated with respect, given an active role and feel their contribution makes a difference. If not, it can be demoralising.

Your turn activity: Online discussion

This is a fantastic opportunity to discuss involvement with a patient.

Task I. Join online discussion with Olivia Fulton

Olivia is a young woman with severe asthma who is involved with the Asthma UK Centre for Applied Research (AUKCAR). She is a member of the Centre Management Committee, plays a leading role in the Centre’s Children and Young People’s Group and advises on various research projects. She writes an online blog about living with asthma.

Prior to the online discussion, read Olivia’s blog https://totallyanonymousasthma.wordpress.com/ specifically the section entitled ‘AUKCAR and me’ and her video about why she became involved.

Presenter: Olivia Fulton Topic: The patient perspective on being involved Date: Wednesday February 3rd 2016 Time: 6 - 7 pm (GMT) Location: http://edinburghcrf.adobeconnect.com/ppi/ This session will be recorded.