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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