My Health Guide: A trial of a tablet app to support people with learning disabilities
| ISRCTN | ISRCTN14890704 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN14890704 |
| IRAS number | 194840 |
| Secondary identifying numbers | 30775, IRAS 194840 |
- Submission date
- 02/11/2016
- Registration date
- 18/11/2016
- Last edited
- 30/10/2019
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Mental and Behavioural Disorders
Plain English summary of protocol
Background and study aims
People with learning disabilities experience poor health in comparison to the general population. This study is trialing a computer tablet based app designed for adults with learning disabilities to enable information sharing between them and health practitioners. The My Health Guide app is intended to empower people with learning disabilities and provide them with greater control, as well as providing people who support them with information to enable them to better understand and connect. It is hoped this will enable people with learning disabilities to play an active role in their healthcare, through receiving and sharing health related information, in a range of formats appropriate to their communication needs and preferences. The aim of this study is to find out information about the contexts in which people with learning disabilities (and their supporters) are able to make successful use of My Health Guide and the usability of the app.
Who can participate?
Adults with learning disabilities who are users to the NHS learning disability service in Hull and the East Riding of Yorkshire and organisations working with them.
What does the study involve?
After agreeing to be part of the study, participants are given access to the App for approximately three months before they are asked about their experiences of using it. Participants are also able to keep the computer tablet they have been issued with and access to the App once the study has finished. A small number of participants are also invited to take part in interviews, focus groups or case studies as well as completing the questionnaire.
What are the possible benefits and risks of participating?
Participants may benefit from an improved ability to explain their needs and concerns, understand how to act on advice given to them and to share information. There are no notable risks involved with participating.
Where is the study run from?
Townend Court, Learning Disability Service (UK)
When is the study starting and how long is it expected to run for?
September 2015 to December 2016
Who is funding the study?
Small Business Research Initiative for Healthcare (UK)
Who is the main contact?
Mrs Patricia Bailey
trish.bailey1@nhs.net
Contact information
Public
Humber NHS Foundation Trust
Townend Court
Cottingham Road
Hull
HU6 8QG
United Kingdom
| Phone | +44 1482 336775 |
|---|---|
| trish.bailey1@nhs.net |
Study information
| Study design | Non-randomised; Interventional; Design type: Process of Care, Education or Self-Management, Management of Care |
|---|---|
| Primary study design | Interventional |
| Secondary study design | Non randomised study |
| Study setting(s) | Hospital |
| Study type | Treatment |
| Participant information sheet | Not available in web format, please use the contact details below to request a patient information sheet |
| Scientific title | My Health Guide – A non-randomised trial of a tablet application designed to support people with learning disabilities |
| Study objectives | The aim of the study is to: 1. Understand the contexts in which people with learning disabilities (and their supporters) are able to make successful use of My Health Guide, and achieve positive outcomes, as well as contexts which impair use 2. Measure the extent to which participants adopt My Health Guide as a consistent approach to the management of their health |
| Ethics approval(s) | North East - Newcastle & North Tyneside 2 Research Ethics Committee, 10/02/2016, ref: 16/NE/0016 |
| Health condition(s) or problem(s) studied | Specialty: Mental Health, Primary sub-specialty: Learning disorders; UKCRC code/ Disease: Mental Health/ Disorders of psychological development |
| Intervention | An overall sample size of 200 My Health Guide users is planned. Participants will be provided with access to the app following consent. After using the app for approximately 3 months, follow-up data will be collected in the participants’ place of residence, or in some cases their place of work, as follows: Questionnaire Participants will be given a questionnaire to complete (duration approx. 30 mins) designed specifically for this trial. Semi-structured interviews Interviews (duration approx. 1 hour) with 15 people, selected using purposive sampling, will be conducted to gain an in-depth understanding of their experiences of using the app. The interview guide has been developed specifically for the trial. Case Studies Five in-depth case studies will be conducted (duration approx. 1 hour per person). Potential case study participants will be selected on the basis that they are frequent users of the My Health Guide app or are using it in especially interesting, creative or unexpected ways. Focus Groups Focus groups (duration approximately 2 hours per group), using a guide developed specifically for this study, will be conducted with healthcare practitioners and independent care providers to collect data about their views and experiences, since they will be key users of the My Health Guide app, alongside people with learning disabilities. Participants will be able to keep their computer tablet and access to the app once the study has finished. |
| Intervention type | Other |
| Primary outcome measure | All outcome measures have been designed specifically for this study; no standard outcome measures are used and all are classed as primary outcomes. 1. Experience of using the My Health Guide app is measured using questionnaires, semi-structured interviews, case studies and focus groups in the participants’ place of residence, or in some cases their place of work 2. Usage of the app is measured using the backend usage data automatically collected remotely by the software provider |
| Secondary outcome measures | No secondary outcome measures |
| Overall study start date | 01/09/2015 |
| Completion date | 30/12/2016 |
Eligibility
| Participant type(s) | Patient |
|---|---|
| Age group | Adult |
| Lower age limit | 18 Years |
| Sex | Both |
| Target number of participants | Planned Sample Size: 200; UK Sample Size: 200 |
| Key inclusion criteria | 1. Aged over 18 2. People with learning disabilities who use the care planning process or who have a care plan in place 3. People with learning disabilities who are supported by named carers who implement the care planning process on their behalf, and who are not able to use My Health Guide themselves 4. People with learning disabilities living in settled accommodation |
| Key exclusion criteria | 1. Under the age of 18 2. Not providing consent to participate (or their consultee has not agreed to this) 3. People are not living in settled accommodation (this is due to concerns that the provision of the tablet in this context may increase their vulnerability) |
| Date of first enrolment | 01/02/2016 |
| Date of final enrolment | 15/11/2016 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
Cottingham Road
Hull
HU6 8QG
United Kingdom
Sponsor information
Hospital/treatment centre
Olive House
32 Holmes Road
London
NW5 3AB
England
United Kingdom
Funders
Funder type
Government
No information available
Results and Publications
| Intention to publish date | 30/12/2017 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not expected to be made available |
| Publication and dissemination plan | Papers will be published in appropriate academic and health-related journals. |
| IPD sharing plan | Datasets will not be made available – this is due to reasons of confidentiality. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| HRA research summary | 28/06/2023 | No | No |
Editorial Notes
30/10/2019: The IRAS number has been added from the HRA website.
