Patient and Public Involvement and Engagement
Interested in becoming a patient partner?
NOAR is looking for new members to join our Patient and Public Involvement and Engagement Group.
What is patient and public involvement and engagement (PPIE) in research?
Everyone benefits from research. This not only includes scientific research in laboratories, but also wider epidemiology research into health and social care. Research provides evidence about what works best. Patients, carers, people who use health and social care services and health professionals all use this evidence to make decisions about treatments and care.
When the patients and the public get involved in research, they work alongside researchers to help shape:
- what research to carry out
- how it’s carried out
- and how the results are shared and applied in practice.
Being involved in PPIE is not the same as taking part in research. It’s not about participating in a trial or study to test a new treatment. It’s about being a member of the research team that works together to design and run the study.
Patient and Public involvement and engagement (PPIE) in research is defined as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.
When we use the term ‘PPIE’, (patient partners) we are including:
- patients and potential patients
- carers and people who use health services.
- people from organisations that represent people who use services.
By getting involved in NOAR research, you can help make our research more relevant and useful to patients, carers, clinicians, and the public. By working with NOAR study researchers, you will improve research and make a difference to what aspects of inflammatory arthritis we study in the future.
Opportunities for getting involved in NOAR research.
Become a member of our PPIE group.
Your knowledge from having experienced your own illness, or the care of others, is of great value to researchers. Researchers may have knowledge about different conditions but unless they have also lived through it, there will be gaps in their understanding.
You won’t be expected to have technical knowledge of how research works. The knowledge you have as a patient, carer or member of the public is what’s unique about your contribution.
You can make a difference at any and every stage of research. Your contributions can help shape the thinking behind the planning and delivery of a NOAR research project. Often the involvement of patients, carers and members of the public determines whether a project gets funded, whether it runs successfully and whether the results change practice.
NOAR researchers are aware of the benefits of involvement from PPIE members and therefore we want to do it well. We want to learn from our conversations with patients, carers, and the public. These will often make changes to our ideas and plans as a result.
NOAR has an added incentive to involve people in our work. When we apply for funding, a critical question is how we have involved patients and the public in developing our proposal, and how will we involve our PPIE members in carrying out the research.
People who get involved in our research have different reasons for wanting to do it. Some people have had different experiences and appreciate being able to do something positive with it. Others see their involvement as an opportunity to ‘give something back’. For most people, it’s about wanting to make a difference – so that in the future, treatment and care will be better for other people with inflammatory arthritis.
You can help researchers to see things that they have missed or misunderstood; you can look at the research from your perspective. You have knowledge and insight from being a patient, carer and/or service user. This ‘lived experience’ is invaluable for research. Your experience of health and social care can help to shape how future research is done. However, you do not always need to have a ‘lived experience’ or specific medical condition. You do not need to have any specialist knowledge or qualifications to get involved in research. Public involvement is for anyone who has an interest in health and research.
You can also help by:
- Making sure research focuses on the most important outcomes.
- Helping to design projects to make it easy to take part as a study participant.
- Making sure written materials are clear and easy to understand.
- Helping to share research results.
- Give us ideas for new research.
Questions to ask:
- What is my role?
- What am I expected to do?
- What happens in meetings?
- What is the overall time commitment?
- How often are meetings?
- Will meetings be held in person or online?
Taking part as a NOAR PPIE is easy and can involve as much or as little commitment as you are comfortable with. This can be discussed and agreed between you and PPIE lead (Jackie Chipping) and the research team.
Feedback
Types of questions to ask:
- How is the research going? What has happened since the last meeting?
- How have my comments and suggestions been used?
- If my comments and suggestions have not been included, why?
- Is my involvement having an impact on the research?
- Is there anything I could be doing differently in my involvement role? Is there a glossary that will explain key terms and acronyms?
- Are there any technical words and concepts that are specific to the research that will need explaining? Sometimes we used medical words or abbreviations that not everyone is familiar with. If this is the case; ask us to explain.
NOAR researchers and the study team know that it is important to give you updates on how the research project is going and give you specific feedback on your involvement role. Sometimes there may be long gaps between information updates. When this is the case, we will keep you updated, so that you do not feel left out or out of the loop.
We have some new and very interesting research studies in the pipeline, and we would be delighted to hear from you.
To find out more please contact:
Jackie Chipping (NOAR clinical Manager)
email: jacquelinechipping@uea.ac.uk
or telephone and leave a message on our answerphone,
Tel: 01603 597205