Barclay, Stephen

Brigden, Charlotte L.

Butler, Claire

Gage, Heather

Goodwin, Mary

Greene, Kay

Hashem, Ferhana

Hayes, Cathy

Mikelyte, Rasa

Rees-Roberts, Melanie

Sisbury, Graham

Wee, B

Williams, Peter

Wilson, Patricia M.

Kent Academic Repository

Kent Academic RepositoryFull text document (pdf)Copyright & reuseContent in the Kent Academic Repository is made available for research purposes. Unless otherwise stated allcontent is protected by copyright and in the absence of an open licence (eg Creative Commons), permissions for further reuse of content should be sought from the publisher, author or other copyright holder. Versions of researchThe version in the Kent Academic Repository may differ from the final published version. Users are advised to check http://kar.kent.ac.uk for the status of the paper. Users should always cite the published version of record.EnquiriesFor any further enquiries regarding the licence status of this document, please contact: researchsupport@kent.ac.ukIf you believe this document infringes copyright then please contact the KAR admin team with the take-down information provided at http://kar.kent.ac.uk/contact.htmlCitation for published versionBrigden, Charlotte L. and Goodwin, Mary and Sisbury, Graham and Rees-Roberts, Melanie andButler, Claire and Greene, Kay and Hayes, Cathy and Hashem, Ferhana and Gage, Heather andWilliams, Peter and Wee, B and Barclay, Stephen and Wilson, Patricia M. and Mikelyte, Rasa (2018) Patient and Public (PPI) Involvement in Hospice research: an example of co-productionDOILink to record in KARhttps://kar.kent.ac.uk/70500/Document VersionOtherEND12 4 5911Research grant funders require patient and public involvement (PPI) to feature in research projects. There is evidence that PPI can have favourable impact on many stages of the research process:  ensuring research evidence is relevant to patients, improving recruitment success, retention of subjects and the uptake of research in practice. Co-production takes PPI one step fu r ther whereby researche rs, practitioners and the public work t o g e t he r, s ha r i n g p o w e r a n d responsibility from the start to the end              of the project.STARTGuidelines will be developed forservice providers andcommissioners, supported bythe consensus events.We plan to work with our PPI co-applicants to summarise and present the Þndings in a way that is more easily accessible to service users and members of the public. The PPI co-applicants have  s    suggested a newsletter as     one form of communication,                in      including sending to the        project participants.1WHAT IS PUBLIC & PATIENT INVOLVEMENT?PRE-APPLICATION PHASE3PHASE I: SURVEY OF HOSPICE H@H SERVICES 8              TEAM CONSENSUS         MEETING49PHASE III: PROJECT OUTPUTS & DISSEMINATION11KEY MESSAGESPPI has had a positive impact on the design and progress of the study to date:success with ethics approval Þrst timesupport with  study documents Support with analysing data PPI has kept patients and carers views at the forefront to ensure the work remains relevant to those who beneÞt from H@H servicesThe transit ion from PPI to co-p ro du ct io n en su re s th at a ll perspectives are equally included throughout the course of the research project.36781012A research project was developed to assess optimum hospice at home services at the end of life (OPEL H@H).PPI supported the preparation of an application for a research grant to the National Institute for Health Research.The PPI group included bereaved carers who had used H@H services. They provided feedback on the project idea, research question, outcome m e a s u r e s , a n d r e c r u i t m e n t process. Two members went on to become Ôco-applicants' on the project grant to act as members of the research team to provide their expertise. 2RESEARCH PROJECT DEVELOPMENT6 DATA CODING MEETING5DATA COLLECTION 7STUDYSUCCESS1012WHAT CAN HOSPICES DO TO DEVELOP PPI? PHASE IPHASE IIPHASE IIIThe survey gathered information on the range of service models and their characteristics. A consensus meeting enabled co-production which involved joint decision making:of the emerging model typesthe selection of research site shortlist to act as case studies for further in depth analysisinterpreting and generating theories from the emerging data from the surveydeveloping a theoretical frameworkThe researchers and PPI co-applicants worked together to decide: the processes and procedures for data collection the questionnaire tools to usewhen and how to approach patients and carers as potential participantsdevelopment of interview topic guides and a framework for analysis of the dataanalysis and interpretation of interview data from service providers, commissioners and carersPPI activities for the development of phase II included  advising on public facing study documents so they were ready to submit for NHS ethics approval, such as:Study information sheetsdata collection forms insight into appropriate processes for approaching patients and carers Current hospice patient and hospice at home staff perspectives were also sought. Their input included:the language and content of documentswhen and how to follow up participantssuggestion of a ßyer to give out in advance to make approaching patients/carers easier. Invite public or service user volunteers to join your research governance committeeSeek volunteers to get involved in research Patients, carers and bereaved carers want to get involved and are very generous with their time. Patient and Public (PPI) Involvement in Hospice research: an example of co-production in action (XOMJKT)-UUJ]OT39ORYH[X_-8KKY8UHKXZY3([ZRKX)-XKKTK1.G_KY).GYNKS,-GMK.=ORROGSY6=KK((GXIRG_9=ORYUT63OQKR_ZK8 KEY MESSAGESPHASE II: IN-DEPTH CASE STUDIESCONSENSUS OF PROJECT FINDINGSThe work will be Þnalised at twonational consensus events (onein the north, one in the south)where our provisional Þndingsand theoretical framework willbe presented and discussedwith a range of stakeholders(including service users). These events  will help tovalidate the interpretation of theÞndings and reÞne ourunderstanding of what works, forwhom, and under whatcircumstances.

Patient and Public (PPI) Involvement in Hospice research: an example of co-production in action

https://kar.kent.ac.uk/70500/1/PPI%20Poster%20Draft5.pdf

Patient and Public (PPI) Involvement in Hospice research: an example of co-production in action

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