Session Information
Date: Thursday, June 8, 2017
Session Title: Other
Session Time: 1:15pm-2:45pm
Location: Exhibit Hall C
Objective: To develop an easy-to-use guide for service development project leads and patients/carers to facilitate the involvement of the latter in the development and implementation of Parkinson’s disease (PD) service improvement projects.
Background: Involving patients and carers in service improvement projects is an essential aspect of patient-centred care, but happens only rarely. It can bring new perspectives to discussions and improve knowledge, health care engagement, and health outcomes. While guidelines are available supporting patient and carer involvement in service improvement these do not address the specific needs of patients with PD.
Methods: We used a semi-structured interview based around the Plan-Do-Study-Act model of improvement to ensure we captured good practice and barriers to service user involvement at each stage of service development. Local clinicians with experience of leading service improvement projects in PD, and patients and carers who have been involved in service improvement projects have been invited to be interviewed over the telephone.
Results: Data collection for this project is still ongoing. Pragmatic grounded analysis of the data generated from the interviews will be used to identify concepts and build common themes. These will describe how patients have been involved in projects and how this could be done better from the perspectives of patients, carers and clinicians. These themes will then inform further discussion by a focus group to define and develop the guide.
Conclusions: Currently most PD services are designed without patient/carer input. Current guidelines for involving patients and carers in service improvement projects do not specifically consider the needs of patients with PD and their carers. Involving this group of service users in improvement projects is essential for facilitating patient-centred care. We will develop a specific, practical guide to help both clinicians and service users ensure the latter are able to actively participate in improving the services they use. The guide will be disseminated via the Parkinson’s Excellence Network.
To cite this abstract in AMA style:
N. Shaw, V. Evans, J. Rideout, C. Carroll. Developing a guide to facilitate involving people with Parkinson’s and their carers in service improvement [abstract]. Mov Disord. 2017; 32 (suppl 2). https://www.mdsabstracts.org/abstract/developing-a-guide-to-facilitate-involving-people-with-parkinsons-and-their-carers-in-service-improvement/. Accessed November 24, 2024.« Back to 2017 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/developing-a-guide-to-facilitate-involving-people-with-parkinsons-and-their-carers-in-service-improvement/