Backpack v1
Research type
Research Study
Full title
Backpack – Person Centred Health, Care and Wellbeing
IRAS ID
184209
Contact name
Nicolas Van Labeke
Contact email
Duration of Study in the UK
0 years, 4 months, 1 days
Research summary
The research seeks to understand the personal journeys citizens with multiple sclerosis (MS) are going through following diagnosis, inform participants of personal control over personal data, and explore how such a Personal Data Store (PDS) could be deployed and adopted for the benefits of MS citizens.
Research and recent reports highlight the urgent need for more integrated person-centred services as a means of delivering better patient outcomes, better clinical outcomes and better economic outcomes. Different implementation scenarios carry different configurations of cost, risks and benefits for different stakeholding groups, and the implementation of digital services has suffered in the past from lack of co-production or consultation with people and stakeholders on the ground before implementation.
The proposed project will enable a group of citizen participants (plus organisations and their representatives) to interact in person-centred scenarios. These individuals may have long term conditions or professional interests with such condition – we have identified Multiple Sclerosis (MS) as a potential starting point – and we will identify needs, barriers, benefits and co-produce implementation scenarios.
The expected duration of the overall project is 5 months and will be carried out in 3 stages, each involving research activities that are designed to achieve the following:
Mini-lab:
Interview with MS support group: gather insights about MS, getting to know the people, their needs and existing supports.Experience Lab 1:
Workshop with MS citizens: map out a typical journey for the first month(s) after diagnosis and explore opportunities for PDS.Experience Lab 2:
Workshop with public sector and social workers (with no experience with MS); play out the journey defined previously and elicit new insights about PDS.REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
15/YH/0358
Date of REC Opinion
21 Aug 2015
REC opinion
Further Information Favourable Opinion