The Highland Pathfinder partnership included researchers from the University of the Highlands and Islands (UHI), who contributed user research with people who experience respiratory symptoms and those who care for them.

To ensure that the project met the ethical demands and research governance requirements for health research, the researchers undertook an ethical approval through the university. Members of the Technology Enhanced Care Team carried out a Caldicott approval process to ensure their collection, management and sharing of patient data reflected best practice.

The aim of the project

The aim of this project is to transform the Highland Respiratory Care pathway towards a pathway that is truly patient centred, by co-designing it with patients and all those who either use or provide respiratory services from the outset.

The Highland Pathfinder partnership included researchers from the University of the Highlands and Islands (UHI), who contributed user research with people who experience respiratory symptoms and those who care for them.

To ensure that the project met the ethical demands and research governance requirements for health research, the researchers undertook an ethical approval through the university.

Ethical approval

The first step involved submitting an application into the Integrated Research Application System (IRAS: https://www.myresearchproject.org.uk/). IRAS is a single system for applying for the permissions and approvals for health and social care / community care research in the UK. It uses a filter system to ensure that the data entered regarding the study is appropriate to the type of study proposed, and consequently the permissions and approvals required. In doing so it helps the requester to meet the appropriate regulatory and governance requirements.

IRAS classified the project as a service evaluation.

A service evaluation reviews current practice and can generate useful information to aid local decision making. Service evaluations do not require a full IRAS approval. IRAS advised that approval through the university’s research ethics process would be appropriate.

The researchers submitted a proposal for ethical approval through the University of Highlands and Islands (UHI) research approval process, which is guided by the UHI Research Ethics Framework. Researchers must submit information about their proposed project, its methodology, data governance, informed consent and other research practice specified in the framework for review.

In addition to the formal research approval, Caldicott Approval was sought, and obtained, for members of the Technology Enhanced Care team to undertake research with patients and carers as part of this project, and for findings (including anonymised quotations from patients) to be used in presentations and reports. This is an NHS approval process for collecting, handling and safeguarding patient data. This ensured that patient data would be appropriately safeguarded throughout the process, including sharing the results.

Hints and tips

• Your local research governance policy can provide guidance on any specific governance or ethics process you will need to follow. This is likely to depend on the scope and context of your project, and the partnerships involved.
• Partnerships with research institutions can be helpful where formal research governance and ethical processes are required.
• Even if a formal ethics submission is not required, planning for legal, inclusive and ethical research is still important.
• Peer review is a good way of checking your research plan.