Project UpdateERICA Project Update for Join Dementia Research

In April 2018 the Office of the NIHR National Director for Dementia Research (NDDR) started delivery of the Embedding Research in Care (ERICA) Project. This post will provide an ERICA Project Update for Join Dementia Research. The project objective being to ensure that NHS Trusts, and healthcare providers, were aware of the governments 2020 Dementia Challenge objectives relating to Join Dementia Research (JDR), and were working towards achievement of the challenge objectives, specifically:

  1. Every newly diagnosed person with dementia and their carer will receive information on what research opportunities are available and how they can access these through JDR.
  2. All relevant staff will be able to signpost interested individuals to research via JDR.
  3. 25% of people with dementia will be registered on JDR.

The project is being delivered in partnership with the Join Dementia Research team working in the NIHR Clinical Research Network (CRN) and JDR partner charities, Alzheimer’s Research UK and Alzheimer’s Society and a group of Trusts and regions who are work with us as exemplars.

Phase One – 2018/19

Phase One of this project, delivered in 2018/19 focused on establishing metrics for the measurement of these objectives, and working with a numbers of pilot Trusts / Regions to understand how best support patients and meet the outlined objectives. The list below details the main outputs of Phase One:

  1. Agreed technical detail behind the 2020 Dementia Challenge objectives.
  2. Established reporting on volunteer registration numbers to support measurement of objective 3.
  3. Developed the online toolkit to support Trusts delivery (nhs.joindementiaresearch.nihr.ac.uk).
  4. Published 10 case studies, detailing successful initiatives, with resources to support replication.
  5. Created a new online staff awareness tool, to meet and measure delivery of objective 2 and onward to support delivery of objective 1 (learn.joindementiaresearch.nihr.ac.uk)

The Trusts / Regions involved in the pilot work, have seen to greatest increases in JDR volunteer numbers, and are continuing to support the project, progressing to made delivery a normal element of the care pathway.

Seven of the top ten regions for registering people with dementia were part of the ERICA Project, and two more are using the tools and resources provided by the project.

Phase Two – 2019/20

Phase Two of this project, to be delivered between April 2019 to March 2020 focusses on supporting spread and adoption of the tools and learning created in Phase One.

The general approach is use existing channels for top down communication to senior NHS staff e.g. Letters, Newsletters, Websites, and undertake local Trust level engagement in a prioritised, and staged process. Additionally, we will be working with colleagues in Social and Primary Care to understand how to reach people through these systems.

This work will be delivered with partner organisations, particularly NHS England (NHSE), NIHR Clinical Research Network Co-Ordinating Centre (CRNCC), and NIHR Local Clinical Research Networks (LCRN).

Key activities for the coming 12 months:

National Communication

  • Undertake stakeholder analysis and identify potential existing national communications channels.
  • Engage with channel owners to communicate about JDR and what we hoped they will do, and use those channels to promote the JDR toolkit, high-impact effective promotion activities and encourage use of awareness tool.
  • This will include Newsletters, Conferences, National Meetings, Letters etc.
  • Statistics on use of the learn awareness site, will be published each week via the JDR website.

Local Communication

  • With NIHR Local Clinical Research Networks (LCRN) we will be undertaking an initial evaluation of current Trust engagement levels with Join Dementia Research according the following criteria:
    • Evidence of using materials.
    • Evidence of patient engagement.
    • Awareness of current volunteer registration numbers / local targets.
    • Evidence of senior level engagement / ownership.
    • Interest in JDR / Research and engaging with ERICA Project.
  • Identify Trusts with potential, distributed across the country, who have already shown they are engaged and supportive of the initiative.
  • Working with LCRNs (where possible, subject to resource levels) work with the targeted trusts for a 5-month period through:
    • Meeting with senior clinical / management leadership
    • Presenting local stats
    • Providing examples, case studies and support of high-impact JDR promotion mechanisms.
    • Webinars with front-line staff
    • Supporting measurement of initiatives and uptake
  • After 5 months, we will redo the evaluation, with the aim of seeing improvement across the board, and particularly in those trusts included in phase 1.
  • At this point a second group of trusts will be identified to repeat the process during the time remaining.
  • Those trusts not in the initial target group will still be reached via national communications.

More Case Studies + Primary and Social Care

  • We will be working with colleagues in Social Care to understand how best to support staff to communicate and talk to patients about Dementia Research and Join Dementia Research. This will allow us to develop learning and case studies for our website. We can then expand out LEARN tool to reach these staff.
  • We will be working with colleagues in Primary Care to understand how the promotion of Join Dementia Research can be embedded in care pathways, and how technology, GP IT systems and annual care plan reviews and support this aim.
  • We will continue to develop learning and case studies for sharing via our website.