What PPI means to us: captured in song

The PPI group set up by the HRB Primary Care CTNI decided it would contribute to the 2017 conference in song. Using a flexible brainstorming technique, the members identified the key messages they wanted to share at the conference. From this, Denis Mockler, a Galway signer-songwriter who is a member of the group, wrote the lyrics for a song and performed the song at the conference (read lyrics here).

Tracking the changes: Clare Inclusive Research Group

The Clare Inclusive Research Group are experts by experience, and have been involved in research and advocacy over many years. Coordinated by Rob Hopkins, from the Brothers of Charity in Ennis, group members, Orla  McMahon, Ger Minnogue, Brian Hogan and Pauline Skehan talk about the importance of measuring the impact of their involvement in research and policy, on tracking the changes that happen when they speak up.

Embedding PPI in a large organisation

The conference key note speaker was Katie Scott, from Cancer Research UK, the world’s largest charitable funder of cancer research. Katie shared the journey that her organisation has travelled in the last few years, developing a shared vision for PPI and undergoing a significant culture change to embed patient involvement as a core component across all levels of the organisation. Her top ten tips are relevant to all organisations, large and small.

Cancer survivor contributes to cancer research

In 2011, Dr. Ed Goodall was diagnosed with colerectal cancer.  After a long two years of surgery and associated treatments, Ed made a gradual recovery. Inspired when reading an item about cancer research in the local paper and filled with a desire to give something back to research, he joined the North of Ireland Cancer Research Consumer Forum. Ed brings the patient voice to the research table and raises awareness about patient involvement among the public.

EUPATI Expert patients

EUPATI, the European Patients’ Academy, provides training to patients on medicines development, medicines regulations, and health technology assessment, aiming to develop expert patients who bring patient insight across the entire medicines development process. Caitriona Dunne of Fighting Blindness tells how she draws on her EUPATI experience personally and professionally.

Dr Derick Mitchell also gives an update on IPPOSI activities.

Lay input to setting research priorities

Jimmy Glynn took part in a clinical trial run through his local general practice surgery. Here, Dr. Sandra Galvin explains one method of bringing together doctors, patients and carers to agree research priorities (the process supported by the James Lind Alliance). Jimmy drew on his experience as a trial participant to contribute to identifying the most important research methodology questions for clinical trials. Jimmy  recounts his experience of being involved and explains his motivation for getting involved.

PPI: ethical questions arising
Public involvement throughout a study can help to make research ethical in a number of ways, for example, making the research more relevant, helping to define what is acceptable to participants, making information more understandable. But does public involvement in the design phase and as research partners across the full research process in itself raise ethical issues? With the growth of PPI in Ireland, it’s time for discussion! Three ethicists from NUI Galway, Dr Allyn Fives, Dr Louise Campbell and Dr Heike Felzmann consider issues arising, followed by a discussion chaired by Prof Eamon O’Shea.
Working with children with chronic pain

Children aged 5-12 years experience chronic pain, excluding them from social and other activities during their childhood. The children involved in this research wanted to communicate with their teachers, their friends and others in their lives what it is like living with chronic pain.

Using participatory research methods, Dr. Siobhan O’Higgins facilitated children to generate their own data, collate, analyse and present their data, and sometimes, come up with their own solutions.

Moving from research participants to research partners

Dr Ann O’Kelly reported on her research exploring the experiences of children and young people in Ireland of parental separation, divorce and subsequent family change. Working with a small advisory panel of young people from the start, the participatory research methodologies used  led a number of the research participants to become research partners involved in the production of two short videos, where the young people involved decided the themes, and scripted, recorded and directed the videos.