Supporting patients to complete Join Dementia Research registration forms in clinic

Project Description

Lancashire Care NHS Foundation Trust have become the first to achieve the Dementia 2020 Challenge objective that 25% of people who are newly diagnosed with dementia (in January 2019) registered on Join Dementia Research. This is due to Memory Clinic staff, led by Yvette Griffin (Team Manager at Fylde Coast Memory Assessment Service) and Laura Barnes (Service Manager at Fylde Coast Community Services), supporting their patients to complete Join Dementia Research registration forms in clinic. This initiative alongside sending out regular letters has proven to be one of the most effective ways in reaching patients.

Since April 2018 the Trust has been working with the NIHR Office of the National Director for Dementia Research, as a participant in the Embedding Research in Care (ERICA) Project.

Read the complete case study here

  • Read the following document: Guidance for supporting volunteers to complete paper Join Dementia Research application forms
  • Each person registering on Join Dementia Research is asked if they are interested in research, and then asked to complete the form in clinic.
  • For people living with dementia, ensure the registration forms are completed, where possible, by the volunteer or representative of the volunteer themselves. A representative is someone who knows the volunteer well, sees them often and would be willing and able to attend research studies with the volunteer – ideally a partner, relative or close friend. If the volunteer is unable to give consent, the representative should be able to give consent on their behalf if they hold Power of Attorney for Health and Welfare.
  • Staff can complete the forms for the patient, and explain the process, what will happen, and help with complex questions – the patient then reads the consent information and signs the form.
  • Some friendly in-house competition can drive adoption of new behaviours.
Adam Smith, ERICA Programme Manager, chats to Yvette Griffin and Laura Barnes about their latest initiative

    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.

    Read the complete case study now.

    • Read the following document: Guidance for supporting volunteers to complete paper Join Dementia Research application forms
    • Each person registering on Join Dementia Research is asked if they are interested in research, and then asked to complete the form in clinic.
    • For people living with dementia, ensure the registration forms are completed, where possible, by the volunteer or representative of the volunteer themselves. A representative is someone who knows the volunteer well, sees them often and would be willing and able to attend research studies with the volunteer – ideally a partner, relative or close friend. If the volunteer is unable to give consent, the representative should be able to give consent on their behalf if they hold Power of Attorney for Health and Welfare.
    • Staff can complete the forms for the patient, and explain the process, what will happen, and help with complex questions – the patient then reads the consent information and signs the form.
    • Some friendly in-house competition can drive adoption of new behaviours.
    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
      Hear About the Project
      Impact of a Research Assistant

        Empowering Patients to Enquire About Research Participation

        Project Description
        When it comes to recruiting people into clinical trials and studies, the onus is often placed squarely with the consultant to ask their patients about involvement in research. However, in an environment where the consultation period is short, research can often slip off the agenda. However, this can be looked at from another angle, empowering the patient to take the responsibility for asking their consultant about getting involved in research. To do this, part of the clinical research network worked closely with a number of managers and service leads across their host Trust to investigate the possibility of placing a simple sentence about research involvement at the bottom of every outpatient appointment letter.
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        • Identify the key stakeholders with the Trust who need to be consulted about any possible changes to standard outpatient appointment letters
        • Manage the relationships with these key stakeholders on an on-going basis
        • Assess the time that will be taken to gain all of the necessary approvals and revise the timelines for any project implementation accordingly
        • Change the wording used to: ‘If you are interested in finding out more about dementia, please visit: www.joindementiaresearch.nihr.ac.uk or call Alzheimer’s Research UK on 0300 111 5 111 or Alzheimer’s Society on 0300 222 1122‘ and use bold/different coloured text to make the sentence more noticeable
        • Recognise that any project involving a number of diverse stakeholders may result in a ‘halo’ effect in which the desired group may not demonstrate the most uptake or engagement and that the results may be witnessed in a different group
        • Advice to Consultants Re: Patient Enquiries

          Policies and new systems need implementing, and staff need supporting to deliver. This letter was used to provide guidance to clinicians participating in the research letter pilot. It provides instructions on where to sign-post patients.

        • Appointment Letter Example

          Every trust will have a different approach to production of outpatient letters, some centralised, some localised. This outpatient appointment letter includes a number of standard options to promote research participation for patients.

        • Dear Colleague Email Re: Project

          Why reinvent the wheel? This simple letter was sent to colleagues to introduce the idea of the project, and seek permission to add a section to letters promoting research participation.

        • Join Dementia Research Leaflet

          This public-facing leaflet can be used to explain and promote Join Dementia Research.

        Hear About the Project
        Introducing Research