The data requirements for the DATUM in Action project were obtained by: (i) a questionnaire (based on those used by the Incremental and Sudamih projects) and (ii) a focus group. An overview of these requirements is given below.
Context
The DATUM in Action (RDMP) project is supporting research staff on an EU project to plan and implement research data management (RDM). The EU project (MATSIQEL), funded under the Marie Curie International Research Staff Exchange Scheme, is accumulating expertise for the mathematical and computer modelling of ageing processes with the aim of developing models which can be implemented in technological solutions (e.g. monitors, telecare, recreational games) for improving and enhancing quality of life. Led by the School of Computing, Engineering and Information Sciences (SCEIS), it comprises six work packages involving researchers at Northumbria (SCEIS and the School of Health, Community and Education Studies (SHCES)) and in Australia, Bulgaria, Germany, Mexico and South Africa. The RDMP project is focussing on two of its work packages (WP4 Technical solutions and implementation and WP5 Quality of Life).
The first Action Research Cycle of the RDMP project was to gather the RDM requirements of the EU project. This was done via a focus group and questionnaires with SCEIS and SCHES staff.
Work Packages
WP4. Technical solutions and implementation
The main emphasis of this work package is to model and predict the use of telecare technology on enabling older people to age in their preferred place and supporting them to do what is important to them. Older people and their carers desire to be independent and have control over their own lives. Technological solutions can contribute to this outcome, however understanding of circumstance and context is poorly developed. This will be addressed by examining historical information from a telecare service on what the user was doing when triggering sensors to predict likely future activity.
WP5. Quality of Life
The traditional view of older people emphasises experiences of loss, decline and dependency. However, there is a growing body of work which challenges this view as an inadequate explanation for experiences which older people themselves identify as associated with well-being, autonomy, togetherness, security, and which they manage through self-care and inner strength. More inclusive definitions of health and quality of life do acknowledge the way that older people use their inherent adaptive capacities to best effect and it is this conceptualisation of quality of life that is the central focus of this work package. An important aspect of this work will be to examine the way that older people engage with telecare technologies to enhance their ability to self-care and optimise their life experience thereby improving quality of life.
Current Datasets
- Data from a telecare service, comprising qualitative and quantitative data
- Transcripts of Interviews with older people, comprising qualitative data
More data will be collected as the EU project develops.
RDM Requirements
For the EU Project
EU funder requirements
Changeability: the EU project is an exploratory project in an under-researched field so requirements will change, and change on a regular basis
Management of ethical approval forms, permissions and correspondence: ethical approval has been obtained for the current research activity; additional approval will be required for new activities. Keeping an audit trail of approval and associated activities will be required
Management of consent forms: consent has been obtained for current and future use of the telecare and interview data. Further data collection may require consent from a new group of participants
Some of the data is covered by a non-disclosure agreement so confidentiality of this data must be ensured
Anonymity of the data must be ensured
The data will undergo a series of manipulations: anonymisation, cleansing, extraction, collation, analysis by different groups using different analytical methods (qualitative, statistical, mathematical modelling). Audit trail, tracking and version control will be required
Within Northumbria University, controlled access is required to the data and associated materials by staff from two schools
Outside Northumbria University, access to subsets of the data by staff from a range of universities within and without the EEC is required. Anonymised data needs to be provided to these staff in a secure fashion, e.g. by the use of encryption, and by a suitable transfer mechanism. In return, these staff need to share their results with Northumbria University staff in the same fashion.
There are different disciplines involved in the EU project, with different research paradigms and expertise with different methodologies. At Northumbria University the disciplines are health, social care, maths and computing. There are different RDM expectations and procedures between the different disciplines, and within and between the different schools.
For the Computing / Maths Disciplines
There are usually no external RDM requirements. Procedures tend to be developed on an ad hoc basis as needed during the lifetime of the project, following industry standards and professional working practices. Expertise is with quantitative data, managing large datasets, and use of sophisticated computing and computational tools. Involvement in ethical approval procedures and participant consent is unfamiliar.
For the Health/Social Care Disciplines
Expertise is with mixed methods, qualitative data and close involvement with participants. A major focus is on ethical issues, particularly informed consent and confidentiality, and ethical approval procedures. There are external requirements for this, e.g. NRES and the Data Protection Act. A much richer collection of associated research materials are produced and require management. The extension of RDM guidance to protocols and possibly standard operating procedures would be helpful.
For both the disciplines, research funding is obtained from a wide range of funders. The Research Councils and big charities now have requirements, for RDM to be included in proposals, and for data to be shared. Over time it is likely that this trend will extend to many other types of research funder.
