Identifying existing models of public and patient involvement in palliative care research in cancer patients for better health decisions




Poster session 3


Tuesday 18 September 2018 - 12:30 to 14:00

All authors in correct order:

Mann M1, Nelson A2, Islam I1, Woodward A1, Seddon K3, Byrne A4
1 Cardiff University, UK
2 Palliative Care Research Centre (MCPCRC), Cardiff University, UK
3 Wales Cancer Research Centre, UK
4 Cardiff and Vale University Health Board, UK
Presenting author and contact person

Presenting author:

Mala Mann

Contact person:

Abstract text
The improved outcomes obtained in research by using public and patient involvement (PPI) are anecdotally recognised in health and social care research. However, it is not quite evident which different PPI models are applied and translated into practice in cancer and palliative care organisations. We carried out a rapid review of evidence for the Wales Cancer Research Centre funded by Health and Care Research Wales.

To identify the existing models of PPI and the main outcomes of using PPI in palliative care research in cancer patients

We conducted a systematic search across a wide-ranging set of databases: MEDLINE, Embase, CINAHL PsycINFO and the Cochrane Library. To identify additional papers, we used a series of supplementary forensic techniques. After removing duplicates and clearly irrelevant records, the searches generated 149 papers. We assessed 44 full-text articles for eligibility. Two review authors independently carried out study selection. Quality assessment and data extraction were carried out by one review author and checked by another. Any discrepancies were resolved by consensus or by recourse to a third review author. We will also report on the specific contribution made by the volunteer research partner to this rapid review.

We reviewed 15 papers for potential inclusion. We will report on the identified models of involvement, types of activities and stage of the research cycle when PPI input was given.

The findings from the review will provide information on existing PPI models and the outcomes of using these in cancer and palliative care research. In the current climate of interest in PPI, co-production and service user involvement, these findings will be valuable to researchers wanting to use PPI across health and social care.

Patient or healthcare consumer involvement:
Public and patient involvement is important in ensuring the relevance of research within health and social care. In designing our review question the active contribution of the patient/consumer partner not only enabled us to be patient-focused but her involvement also improved the quality of the rapid review.

Relevance to patients and consumers: 

To identify best practice Public and Patients Involvement (PPI) models, we used the recommendations of a PPI partner known in our organisation as the ‘research partner’. Her contribution to the research question gave insight and clarity about the public/patient’s view. Her assistance with capturing essential data in the data extraction form helped to improve the rapid review. Both contributions demonstrate that PPI input can improve both research and ultimately outcomes for patients.