Summary
To improve NHS care and focus resources effectively, we need a 'research active nation' where people actively help deliver high quality research. Research for the Future is an innovative collaboration between NIHR CRN: Greater Manchester (NIHR CRN:GM), North West EHealth (NWEH) and Salford Royal NHS Foundation Trust (SRFT). It consists of a series of 'Help BEAT' campaigns, of which diabetes is the fi rst. Each campaign invites people with a particular health condition to register their details and research interests on a database. In doing so, they give their 'consent for approach' and can be contacted in the future about a range of research opportunities. This method of linking research teams with people interested in participating helps recruit to time and target.
Results
There are more than 3,700 people on the Help BEAT Diabetes database with 1,600 living in the target area corresponding to NIHR CRN: Greater Manchester footprint. The most successful advertising method is general practice using FARSITE to identify and invite their diabetes population (29% of database registrations). This can be time consuming to implement. NHS diabetes healthcare staff play a valuable role in encouraging people to register (20%) and the campaign website accounts for 15% of registrations as well as providing general information. To date, 14 practices have invited 4,045 patients to join Help BEAT Diabetes. 263 have signed up (5.4%) at a cost of £2,785 (£10.50 per patient). Should those registering go on to participate in one or more studies, the project may be highly cost-effective.
Challenge
A survey of the public's attitude towards health research showed high levels of confidence in NHS research (HRA, 2013) and willingness to participate. However many people are unaware of what research takes place locally or how to get involved. One barrier in recruitment to diabetes studies is that most people with the condition are managed in primary care whilst research centres are frequently based in secondary care. Research for the Future is a collaboration between NIHR CRN:GM, NWEH and SRFT who host the campaign. All have close links with the Manchester Academic Health Science Network (AHSN) who are experienced in the development of health informatics technology and Manchester Academic Health Science Centre (MAHSC) who are committed to providing research leadership and increasing public involvement in research. Partners in the project include Diabetes UK who have significantly helped raise awareness of the campaign and Novo Nordisk who supported the pilot with an educational grant.
Objectives
To improve recruitment to research studies to time and target by building a database of volunteers who consent to be approached in the future about studies they are both eligible for and interested in.
Solution
Actions included piloting a feasibility and recruitment tool, 'FARSITE' ('Feasibility Assessment and Recruitment System for Improving Trial Efficiency) and creating a diabetes consent for approach volunteer database. An NHS contact centre was set up within the existing diabetes team and 18 pilot sites with FARSITE were started in three geographically different regions.
Learnings
Key learnings from pilot and roll out to date include: targeted marketing from a respected health care professional or organisation is the most successful method of recruitment to the volunteer database (eg GP, diabetes healthcare professionals, Diabetes UK), while radio advertising is the next most successful method. Also, ongoing, planned communications and publicity are vital to encourage new registrations and maintain engagement of existing members. Database maintenance (eg contact details) is time consuming but worthwhile – and ongoing promotion to researchers is essential. FARSITE relies on standardised GP coding of disease and drugs (which is not always the case) and ongoing GP/FARSITE validation is required. GP practice staff also require ongoing FARSITE training and support. Finally, using the database as a 'first screen' for key protocol criteria is currently the most cost effective and efficient method of informing people about research opportunities, until volunteer numbers increase sufficiently to utilise the link from database to medical record.
Evaluation
The number of diabetes studies which have been helped with recruitment and the number of patients taking part has continued to increase each year. The role of the Research for the Future team has also expanded and helping people engage with their health condition in the broadest sense is now an integral part of the service. Volunteers are regularly informed about local Trust events, Diabetes UK education days and local wellbeing courses.
