ehealth and Data Analytics Dementia Pathfinder Programme Dementia Analytics Research User Group (DARUG) PPI Steering Group

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1 ehealth and Data Analytics Dementia Pathfinder Programme Dementia Analytics Research User Group (DARUG) PPI Steering Group Role Description & Terms of Reference August 2018

2 Role Description Project overview Health and Social Care Board (HSCB) has been successful in an ehealth and Data Analytics Dementia Pathfinder Programme bid which has been part funded by the NI Executive Office, Atlantic Philanthropies and Department of Health. This Dementia Pathfinder Programme sets out to promote the development and use of dementia data to enhance understanding of the disease and to identify areas where care and support for people with dementia can be improved significantly. These priorities are reliant on meaningful access to a wide range of relevant and recent data, to be used quickly by a team capable of delivering analysis on the data in an effective way (data analytics). There is funding provided for three separate but closely linked, areas of research and innovation: 1. The setting up of a dedicated team of data analytics experts. Whilst the initial focus of this team would be on dementia, it is expected that the capability would be retained to support a more data driven approach across the health and social care system. 2. The commissioning of a programme of academic research from Queen s University Belfast (QUB) to include the input of a Dementia Clinical Research expert and two Research Fellows. It is anticipated this research would be locally relevant but may also have a more international focus. 3. The commissioning of 10 non-academic / real-life data analytics projects aimed at improving our understanding of dementia in Northern Ireland and informing better services and support for people with dementia and planning for the future. A Dementia Analytics Research User Group (DARUG) comprising of health & social care professionals, academia, community & voluntary sector has been convened, whose role is to: Maintain an overview of these areas of inter-related activity (see diagram below) Facilitate connections between this research & innovation activity and the broader HSC, 3 rd sector provided services and other research & development activities; Assess how the outcomes from the QUB research may appropriately be disseminated and incorporated within the delivery of dementia services; Act as customer to identify priority areas for investigation by the analytics team who will do preliminary research, advise on what more could be done (with additional external input or by the analytics team), and scope out and advise on the commissioning of further analytics projects; Lead the effective commissioning of the 10 non-academic / real-life data analytics projects ensuring that they are responsive and appropriate to the needs of those with dementia and to the provision of services. Page 2

3 Programme of work 1. PPI Steering Group Arising from the work of DARUG there is recognition that a Personal and Public Involvement (PPI) approach is required to ensure continuous engagement with people with dementia and/or their carers. A PPI sub-group met and it was agreed that a PPI Steering Group be set up - with a maximum of 10 individuals comprising of person/s with dementia and/or carers as well as organisations representing people with dementia and their carers. The role of the group is to: meet face-to-face on a 3-monthly basis; ensure work carried out is dementia friendly and takes onboard needs of people with dementia and/or their carers; provide feedback and views to QUB research team and successful data analytic project leads on the development, implementation and outcomes of research projects; provide networking opportunities and access to the dementia and/or carers community; and communicate the work of DARUG to the wider dementia/or carers community Page 3

4 2. Call for Expressions of Interest A call for Expressions of Interest was initiated in July 2018 for a number of data analytics projects - the programme is interested in data analytics projects that make innovative use of existing data / uncover new data (quantitative and qualitative) to: derive useful and important information about dementia with potential for sustainable improvements in the relevance, efficacy and value for money of publicly funded dementia services; enable proactive public health prevention and management through effective data use; and sustain improvements in dementia data systems and practices. HSCB envisages there will be more than one round of calls for Expressions of Interest for data analytics projects. The PPI Steering Group will nominate 1-2 members to carry out the evaluation of the PPI criteria and any information on the scoring/evaluation criteria will be provided in advance. Criteria To fulfil this role we are seeking individuals who: has experience of health and social care from the perspective of a person with dementia or a carer; has time to provide advice/guidance/review communication information e.g. quarterly bulletins with write-ups on the various dementia project to wider dementia community; is able to participate in group discussions on the use of dementia data from a person with dementia or carer s viewpoint; can identify and engage with the wider dementia community and carers representatives as and when required; and is able to communicate their views across in a clear manner. Support To support you to fulfil the role we will: provide you with information about the programme of work and your role in this work; organise face to face meetings where preferable and host meetings via video conferencing facilities, when required; provide reimbursement for out-of-pocket expenses (e.g. travel and carer s costs) in accordance with Health and Social Care NI reimbursement policies and procedures; provide briefing before and debrief after meetings; where required provide necessary training to develop new skills and knowledge e.g. evaluation of data analytics projects Page 4

5 Commitment As a PPI Steering Group member we would like you to commit to: initially be available from September 18 - August 19 to meet every 3 months with a review 2 months before end date; attend meetings between 2-3 hours in a location that is easy to travel to, either by car or by public transport; and review documents in between and before meetings. How to apply and contact details We are requesting the respective organisations below to ask people with dementia and/or carers to come forward if they are interested in applying to become a member of the PPI Steering Group: Respective HSC Trust Dementia PPI groups Dementia NI Alzheimer s Society Age NI Carers NI Other relevant organisations If you are interested please register your interest by completing the attached application form before 4:00 pm Friday 31 st August or if you wish to seek further information please contact: Ms Soo Hun, Programme Manager soo.hun@hscni.net Telephone: Page 5

6 Dementia Data Analytics Research User Group PPI Steering Group member Application form First Name: Last Name: Address: Postcode: Tel No: (optional) Status (Please select as appropriate): Person with Dementia Carer Other By Page completing 6 and returning this application form you giving consent for your information to be held by the organisation. All information will be held securely and will not be shared with other parties without your permission.

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