Health Research Authority - Guidelines - New best practice guidance for public involvement
The Health Research Authority (HRA) has launched brand-new public
involvement pages with information about how to involve
patients
and the public well from the beginning of your research projects.
The guidelines have been produced by the HRA Public Involvement Team, which
works with researchers, patients and the public to ensure patients and the
public are placed at the centre of health and social care research.
There are four key principles for best practice in public involvement:
- Involve the right people - people who have lived experience relevant to the health condition or social care situation being researched, and to the people the study will aim to recruit as participants
- Involve enough people to provide a reasonable breadth and depth of views on the issues that are likely to be important to the people the study will aim to recruit, and who it is intended to benefit
- Involve those people enough in as many aspects of the study as is feasible, productive, and appropriate to the research - and at the right times
- Describe in your application how it helps using the question specific guidance in the Integrated Research Application System (IRAS) to make it clear how involving people well helps to address potential ethical issues.
The guidance is
here
.
Produced by use MY data
Further details from contact@usemydata.org.uk
Please use the patient data citation:
"This work uses data provided by patients and collected by the NHS
as part of their care and support"
The patient data citation was conceived and developed by the patients and carers in the use MY data patient movement. It has been widely adopted by data and research organisations, and recommended for adoption by the major research funders in the UK.
About use MY data
use MY data is a movement of patients, carers and relatives
use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.
use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.
use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.
Our vision
Our vision is of every patient willingly giving their data to help others, knowing that effective safeguards to maintain the confidentiality and anonymity of their data are applied consistently, transparently and rigorously.
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