Empowering Patients

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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The results, although impressive, were not due to patient empowerment as expected. But once again proved the importance of engaging patient-facing NHS staff in research and the positive impact one small simple change can make to patient recruitment. Through altering the trust approval process and standard appointment letters, consultants were more aware of the research going on locally and referred more patients to research. Join Dementia Research supports putting the power in the patients’ hands, and means consultants do not need to know the details of research studies in their area, as people signing up to the service can see for themselves which studies they may be eligible to take part in.

Full Case Study

Having the Last Word: Empowering patients to enquire about research participation

Top Tips

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

Resources

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.

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Hear About the Project

Introducing Research