Ever thought of getting involved in research? Involvement is more than just participating in research as a test subject, although that is valuable and worthwhile in itself. Did you know you can help to steer researchers using your own lived experiences or ideas about research?
Our Patient, Carer and Public Involvement and Engagement initiative encourages patients, service users, carers, family members and members of the public to get involved in research.
The research we conduct is very valuable to the Trust and beyond as the outcomes of the studies can determine best practice for the future. Participation is key for ensuring that the research we conduct is able to be funded and run and teach us more about areas we are passionate about
My Name is Carolyn and I am a person with lived experiences since 1999.
How have I benefited from being involved in research projects as a participant?
- Talking about my episodes clarified them for me
- Knowing I was giving something back is a good feeling
- Have found a space to recount my story
- Helping to inform others about recovery
- Meeting new people
- Using my Lived Experience to inform projects
- It was that something that was worthwhile and rewarding.
Why is it important to have Lived Experience in projects?
- Participants seem more at ease knowing I have a diagnosis like them
- Knowing that something good can come out of challenging times and experiences gives hope
- Lived Experience of conditions is a valuable resource.
Please see a short video from Carolyn
Information sharing for research is aiming to give every patient in our Trust a chance to be involved in clinical research. We are asking patients if:
- They give permission for their clinical records to be used for research purposes.
- They give permission for Southern Health researchers to contact them about research they could take part in.
Following consent patients are regularly screened and informed about research they are eligible for. They are then approached and can make a decision as to if they would like to be involved or not.
Here a list of questions and answers you may have about getting involved in research
Research is scientifically investigating a hypothesis to see if it is true, which can then help us to make better decisions about treatments and services. There are many different types of research such as a questionnaire study or a drug trial. In some cases there may be an incentive to take part in the study, sometimes there may not be a direct benefit to yourself to take part but your participation could benefit others in the future.
Public Involvement involves patients, carers and members of the public.
Public Involvement: (PI or PPI – Patient and Public Involvement) in research is about research that is done ‘with’ or ‘by’ the public rather than‘to’, ‘for’ or ‘about’ them. (www.invo.org.uk)
PI: is when members of the public get actively involved in the research process. (For example, where members of the public give their advice using their lived experience or work alongside researchers on a project.)
By understanding what Public Involvement means you can make the decision whether to get involved and how you may want to be involved.
Public Involvement is an important part of research. It gives research an alternative view to that of the research team and NHS staff. This is very valuable and can make a big difference to a study’s success. It is morally correct that people with lived experience of conditions and members of the public are involved in the research that concerns them.
Getting involved in research can help shape:
- what research is done and how
- the services and treatments being researched
As a member of the PI group you might be offered opportunities to:-
- Be a member of a research steering committee or advisory group
- Ensure research is asking the right questions and help select relevant topics
- help to design research projects
- aid in the development of clear participant information sheets
- aid in the development of interview and focus group questions
- become confident enough to undertake some of the research
- help interpret the results of the research
- help make sure the way research is reported in clear and understandable
No specialised knowledge or research is needed to do PI. Lived experience or knowledge that you have gained living your life is important as everyone has a different perspective and this can all help the researcher to plan better research. If people are interested we could run training sessions on research as required.
The benefits of being involved through PI could be something additional to put on your CV, meeting new people, developing new skills and gaining confidence. You may find you develop positive working relationships and have fun too! It can also mean that future generations can get access to better treatments.
How to get involved
Contact our Patient, Carer and Public Involvement and Engagement Co-ordinator Carolyn Asher
- Email: PPIE@southernhealth.nhs.uk
- Call: 02382 310 787
Click here to register for Public involvement in research https://southernhealthnhs.fra1.qualtrics.com/jfe/form/SV_cOx1w4krgHnXmOq