Patient and public involvement | Management and control of tuberculosis control in socially complex groups: a research programme including three RCTs

Management and control of tuberculosis control in socially complex groups: a research programme including three RCTs · Patient and public involvement

Patient and public involvement

Public involvement has been vital to the implementation of this research. As part of the grant development process, we consulted with user representatives including Groundswell and its tuberculosis peer educator project, and TBAlert (Brighton, UK) (an advocacy charity for people with tuberculosis). Through collaboration, these organisations have been involved in different aspects of the project. TBAlert is enlisted on our participant information sheets as a point of contact for independent information on tuberculosis and participation in our research. The peer educators (people who have personal experience of tuberculosis, homelessness and/or drug and alcohol problems) have been extensively consulted throughout the development of the research project and are part of the intervention in substudy 3 (improving mobile radiographic unit uptake). They are trained and highly supported by Groundswell, a professional service user involvement organisation, to use their experience to increase screening uptake, increase adherence to treatment and raise awareness of tuberculosis among socially complex groups accessing homelessness and/or drug and alcohol services, as well as to train health professionals working with the targeted group. Links with community drug and alcohol services as well as local blood-borne virus screening groups have also been an integral part of executing substudy 1 (latent tuberculosis infection screening in the community setting).

The peer educators from our study have been actively involved in patient and public involvement work, such as undergraduate teaching sessions and a number of radio and television programmes highlighting their work (including an edition of the BBC programme ‘A day in the life of the NHS’ and Radio 4’s ‘You and Yours’ programme). One peer educator has also contributed to the NICE Public Health Guidance Identification and Management of Tuberculosis in Socially Complex Groups as a patient representative and another of our peer educators is a patient representative on the current NICE guideline development committee for ‘Clinical and Public Health Guidance for Tuberculosis Management and Control’.33

Attribution. Alistair Story; Elizabeth Garber; Robert W Aldridge; Catherine M Smith; Joe Hall; Gloria Ferenando et al. (2020). Management and control of tuberculosis control in socially complex groups: a research programme including three RCTs. NIHR Journals Library. Copyright © Queen’s Printer and Controller of HMSO 2020. This work was produced by Story et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK. Licensed under CC BY 4.0. NCBI Bookshelf NBK563462. CC BY 4.0. Original source ↗. Text reproduced from the Bookshelf XML without changing wording; figures, images and supplements are not reproduced.