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.
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.
Click here to hear about our Patient, Carer and Public Involvement and Engagement Co-ordinator, Carolyn's, pathway to research.
- Find out more by downloading the PPI leaflet here.
- If you want to see the studies that are currently running in the trust, please click
If you have any questions or would like to find out more information, contact Carolyn Asher, Service User Research Assistant and Patient, Carer and Public Involvement and Engagement Co-ordinator on 02382 310 787
If you would like the get involved with research, please fill in this form.
I have been a user of Mental Health Services since 1999.
In this time, I have:
- Undergone psychological counselling
- Been held in a secure psychiatric ward in California
- Been a UK psychiatric ward inpatient 7 times
- Been sectioned under the Mental Health Act several times
- Felt my life was ruined and irrecoverable
- Been given antipsychotic medication, both as pills and injections
- Attracted a diagnosis of Schizophrenia
- Undertaken and passed a degree and a masters course
- Lost friends and acquaintances,
- Lost housing, a job, and my confidence
- Been rejected for many jobs especially in 2009
- Been given the opportunity to volunteer at Southern Health
- Taken part in many research projects which I have found out about and for which I was a suitable participant
- Slowly regained my confidence and abilities
- Found a treatment that works for me and keeps me stable
- Been employed in several part time roles in the Trust
- Made many new friends and acquaintances
- Felt my life is good
- Recovered from psychosis and its effects
- Done a Tandem Skydive from 15000ft and raised over £1000 for Solent Mind
- Been thankful to all who have helped in my recovery
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
- Turning something which seemed to destroy my life into something 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.
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.
Frequently Asked Questions
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.