Memory Clinic Mailing – the best way to spread awareness about Join Dementia Research

Project Description
Fylde Coast Memory Assessment Service wrote to everyone who received a diagnosis within the past 12 months to offer them the opportunity to engage in dementia research by registering on Join Dementia Research as part of a new initiative piloted by Fylde and Wyre Coast Clinical Commissioning Group.

There was a 5% uptake, with more people registering on Join Dementia Research during the first 3 months following the initiative compared to the number who registered within the past year.

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  • Ensure you are working within the guidelines and principles of general data protection regulations
  • Include a registration form with the letter
  • Focus on one initiative that is likely to have the biggest impact
  • If possible, offer the name, number, and availability of a local Join Dementia Research champion who can be contacted if people have any questions or queries about Join Dementia Research and the registration process
Yvette Griffin and Laura Barnes led this initiative at Fylde Coast Memory Assessment Service

    Support at home – the key to signing up new recruits

    Project Description
    One NHS Foundation Trust in the North of England, has seen a substantial rise in the number of patients signing up to Join Dementia Research. Tees, Esk & Wear Valley (TEWV). This shift has increased since they have recruited a Research Assistant, Lauren Roberts, who’s role is to promote and recruit patients to Join Dementia Research.

    She has spent the last eight months testing a range of different approaches and has identified one that is particularly successful – offering a home visit.

    In 2016-2017, 818 people were recruited. Almost double the amount, compared to other trusts with a similar numbers of people with dementia, where they don’t make home visits.

    • Identify the correct contact person or key gatekeeper in every organisation or voluntary group
    • Compare and contrast the best communication tools for use across a given geographical area taking into account peoples preferences
    • Understand that considerable time can be needed to agree wording on communication tools like leaflets or for questions in a questionnaire
    • Keep the design and appearance of the questionnaire simple and ensure that the wording is clear and formulated in such a way as to engage the respondent
    • Ensure that translated versions of the questionnaire are available for the most commonly used languages amongst your target population
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    Impact of a Research Assistant

      Embedding Research Consultation

      Project Description
      Broaching the subject of involvement in a research study or clinical trials can be tricky. Who is the best person to do this? And how should a patient be asked? Conventionally the onus to do this has rested with the consultant looking after the patient but, as our expectation of experiencing the very best that our National Health Service can offer, more and more people are becoming aware about getting involved in research raising the possibility of recruiting greater numbers into trials. A wide ranging consultation was conducted in the South West of England with some of the area’s leading dementias and other neurodegenerative diseases charities to ask people how that would like to be told about possible involvement and how they would like to be kept informed about current research.
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      • Be equipped with Join Dementia Research materials which best suit the individual
      • Make sure to arrange the home visit for the most appropriate time for the individual
      • Create a spreadsheet for monitoring purposes
      • Provide referral progress charts for clinicians
      • Ensure the referral process suits each individual clinician/clinic by being aware of their dementia pathway
      • Be aware of research studies in the area of each home visit so you are prepared with an example of a study they may match to
      • Delivery Plan

        A delivery plan is essential. This plan was developed by the team to detail the work being undertaken as part of the project, timescales, owners, risks and success measures.

      • South West Patient Groups

        Regions may differ, however this local structure chart should provide clues as to how other regions are organised. It details the local charities and possible links for engagement.

      • Survey Form and Information Sheet

        Surveys are increasingly used to get patient opinion and input. Here are questions and information sheets: seeking opinions on when and where to approach patients about research, and gauging interest in a patient advisory panel (PAP).

      • Patient Consultation and Project Outcomes

        Survey results need to be used to inform strategy and future plans. This paper presents the outcomes of the patient consultation / survey, and the approach for future PAP. These results were then utilised to inform other recruitment activities.

      • Standard Operating Procedures (SOP) for Patient Advisory Panel (PAP) Information Governance

        SOPs are a standard tool to ensure consistency of delivery. This was drafted to detail and govern how responses would be managed to the patient survey, and interest in research / PAP.

      • Patient Leaflet

        Local leaflet to promote patient involvement in research.

      • Patient Advisory Panel (PAP) Strategy and Terms of Reference

        Documents for the PAP, providing the strategy for the group and its terms of reference. A format that could be transferred and used for any region considering establishing a patient advisory panel, or collaborating for more disease areas with common factors e.g. age.

      • Patient Advisory Panel (PAP) Biography Form

        Form created to capture basic information on patients applying to join the PAP.

      • Panel and Information Registration Form

        Patient demographic in your region should be assessed before deciding how to capture information. This demographic preferred a hard-copy form. This was created to capture information on those registering for information.

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