February's Minutes

Minutes from February 2018

Hello Everyone,

Just a quick update on our speakers talk from February.

We welcomed Barbara Moore from Health and Care Research Wales (HCRW). She kindly came and spoke about the Involving People Network.

Barbara gave us an outline of how she became involved in HCRW, she is a registered nurse and worked for a number of years as a cancer nurse where she was given the opportunity to work as a research nurse working with patients on research projects for researchers such as Cancer Research UK ensuring the patients had a voice.

She moved to HCRW as a natural progression. The HCRW have a support centre based in Cardiff and amongst other things they support public involvement.

Researcher are always striving to find evidence to confirm actions or to find a better way, this is true in Diabetes who are researching how we can best manage our own conditions and how we are supported, this is how every research project starts.

HCRW bring together Universities, the NHS our GP’s, drug companies and government departments to forward research proposals to the medical research council, this is not funded by the NHS as most research projects are funded by the Government and Charities such as Diabetes UK. Or Cancer Research UK for example.

But why Public Involvement? Why is it important.

Researchers have to include a public perspective in their proposals, this is not always necessary but in order to be passed by the Ethics Committee and to be more likely to be successfully funded, then public involvement is something every researcher should be obligated to obtain.

It’s important to remember that public involvement is not seen as participating in research studies, participants do not have a say in how research is conducted. However public involvement is, sometimes academics have ideas to research but when presented to a patient there are some things which just wouldn’t work for example, and this is an extreme example, If a research asked that for research they would need a participant to inject in a site 10 times a day which would seem logical to the researcher, however for a person “critique-ing” a project they may flag that as unreasonable, or taking bloods every other day, again seem logical for a researcher but to a patient, is this in their best interest. This is the type of question someone taking part in public involvement may be able to ask. Sometimes the researchers forget the human side of their work as they are focused on the end result. But with w public contribution during the steps of developing a research idea these issues can be addressed by the people who are in the end going to benefit from this research.

It's important to remember Involvement is working with researchers, participation is being the recipient for that research and engagement is sharing the event.

Public involvement is more about sharing your opinions that being responsible for research. As such HCRW have 2 directories relating to involving people, the first is a weekly newsletter sent out for a wide range of research topics and people are asked to comment on them and can look into them in more detail as something they maybe interested in getting involved in.

The 2nd directory is under the HealthWise Wales initiative which is where information in stored on a database for looking at trends etc., it is ALWAYS deperonalised but when researcher are looking for, for example, how many people over the last 10 years have been diagnosed with Diabetes. A request would go to access that information from the database. This database can be updated by anyone over 16 updated online every 6 months via a questionnaire sent to you to complete.

I am included on the Diabetes Research Unit Wales’ Public Contributor Panel and we are asked to review research proposals and asked to comment and take feedback from researchers who have come back with comments like, I have changed the wording in line with your recommendations, or We have decided that this area needs further research before we can follow this research path. So it comes in valuable to researchers who are more likely to be successful in their funding bids if they have shown they have taken contributions from members of the public.

If you want to get involved in the Public Involvement Network you can register at

 research-involvement@wales.nhs.uk

www.healthcareresearch.gov.wales/public

02920 23 457

You can register or find out more for the HealthWise Wales Initiative at

www.healthwisewales.gov.wales

tel: 0800 9 172 172 or 02920 768090

healthwisewales@cardiff.ac.uk

The Diabetes Research Unit Wales are also going to be looking for more participants on their Public Contributors Panel and you can find out more at http://www.diabeteswales.org.uk/en/

March’s meeting we welcome Rhian Liddard and Joe Cuff from Diabetes UK Cymru

March’s Meeting is Thursday 15th March 7pm Ss Julius and Aaron Church Hall, Heather Road, Newport, NP19 7JT