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Patient and Public Involvement FAQs

Are you thinking about getting involved in health research?

To help you decide whether to join Involve Hull, we have spoken with some of the people who are already involved in our research. Here are some of the key questions that you might have about taking part. If you have any questions which aren’t answered here, then please contact us at InvolveHull@hull.ac.uk.

Frequently asked questions

What is patient and public involvement?

This is the name we use for involving members of the public in research. It means an active partnership between members of the public and researchers in the research process. It is not about the participation of people as the ‘subjects’ of research. Public involvement means doing research with or by the public, rather than to, about or for the public.

Why is patient and public involvement important?

Researchers know about different health conditions, and how to treat them. But most will not have lived through it. Sharing your experiences and views about what it is like to live with ill health will fill these gaps in our understanding. You can help us to focus on what really matters to people.

Your involvement helps to ensure that research is relevant to real-life issues, and reflects the interests and concerns of people who use health and care services. With your help, our projects can provide better evidence to improve services and how people are looked after.

Who can join?

We are looking for people who have experience of living with, or caring for someone with, a long term health condition or serious illness, or using health and care services. This might mean you have experienced serious illness yourself. Or you might have looked after a loved one with a serious illness.

We also need help from people who are generally well but have recent experience of using local health services such as maternity services, mental health services, dietetics, physiotherapy, or breast or bowel screening services, to name but a few.

Do I need to know about how research works?

You do not need to know about how research works. We will help you as you go along. We offer regular learning and development opportunities for network members. We will also pair you up with a more experienced person when you first join the network.

You bring knowledge as a patient, carer or family member, or from using health and care services – that knowledge is unique, as is your contribution to the process.

What will I be doing?

There are lots different ways to get involved. You can share your thoughts and views on research ideas and plans. We might ask you to:

  • Identify topics and priorities for research – usually as part of a group of people who all have some experience of a health condition, for example cancer
  • Give your views on how we carry out our research – with other members of the public, or talking to a researcher on your own
  • Comment on questionnaires and patient information leaflets – you can do this via email/post or in a group discussion
  • Advise us on how to recruit patients – with other members of the public, or talking to a researcher on your own
  • Join a lay advisory group for a research project – with regular meetings throughout the project
  • Help to promote our research in the wider community – for example by taking part in public events with researchers and other network members

You will also be one of the first people to hear about the findings from projects you help with!

Who are the researchers and what do they do?

Researchers in our department work on a wide range of projects to do with health and care. Our main research areas are cancer (early diagnosis and management), primary care, palliative care, alcohol and addictions, pregnancy and maternal health, and living with long term conditions (such as dementia, breathlessness and heart disease).

Working in groups, we design and carry out projects to answer research questions that will make a real difference to health and wellbeing in our region and beyond.

All of our researchers have a profile page here.

Will any personal details I reveal be kept confidential?

Yes. If you decide to join Involve Hull, we will request your contact details and some information about your interests and characteristics. This information will be stored safely in line with data protection law. We will delete any personal information that we have about you on request.

Researchers are required to undergo training to ensure that they know how to deal with sensitive information. Therefore, any personal experiences you share will be treated with the upmost confidentiality. Your involvement should be a supportive experience, where researchers and members of the public share experiences and learn from each other.

How much of my time will it take?

We plan to hold at least four meetings a year for the whole network. These will combine learning and skills sharing, and talks about different research projects. We host social events for network members. We will offer you the chance to get involved in a range of other activities and projects. Some of these can be carried out from home.

We will work with you to make sure that your level of involvement is right for you. This depends on how much time you have, how involved you would like to be, and the specific projects that you get involved with. Some projects will only need a little bit of help, in other studies there are opportunities to get much more involved. For example:

  • Sharing your views on the types of research projects we do might take an hour or two
  • Commenting on information about a project and telling us what you think usually takes a couple of hours
  • Being a co-applicant or a member of an advisory group might involve attending meetings every month or two for a few years, so is a bigger time commitment
  • Helping to redesign a clinic or service might take a few months with regular meetings during that time
Will it cost me anything to take part?

No. You will not be out of pocket. We will reimburse you for the costs of getting involved with our research. This might include the costs of travelling to a meeting, arranging childcare, or paying postage. We will also offer you a fee for your time when we ask you to carry out a specific task or activity. This is in recognition of the contribution that you make to our work.

We will give you more information about our reward and recognition policy when you join Involve Hull.

Where will meetings take place?

Most meetings will take place at the University of Hull or at a local NHS service. But, we also want to make meetings easy for everybody for attend, so some meetings will take place locally to you. We will make sure that all of our meetings are held at venues with good disabled access. For some projects, you may be able to contribute via e-mail or post.

Can my carer be involved to support me?

Yes. You are welcome to bring a carer or family member to our events to support you.

We welcome carers and family members who wish to get involved and share their experiences as well. This supports our work to ensure that people who take care of somebody with a serious illness or health condition get the support that they need.

Do I need to be able to use a computer?

No. There are lots of ways that you can share your views without using a computer. This might be by attending meetings, or commenting on paper copies of documents. For some tasks a computer might be helpful, but it is not essential. We will work with you to find out the best way to help you take part. 

Will I receive any training?

Yes. We will provide some initial training to introduce you to health research, your role and the different ways that you can be involved in our research. Individual projects will also provide specific training. We offer regular learning and development opportunities, including the chance to share your skills with others. Attending training is not compulsory, but it will help you to get the most out of your role. Training events are a good chance for you to meet some of our researchers and other members of Involve Hull!

Will there be any support if I become upset or anxious?

Yes. Your wellbeing is always a priority for us. Our researchers are well trained and experienced in providing support to people who take part in research. If you become upset or anxious during one of our events, we will pause the session. We can provide support in a private room, giving you the chance to speak about any concerns and have some refreshment. You are always free to stop participating in a session if you do not feel comfortable. However we hope that our events offer a supportive environment, where people often share quite similar experiences and support each other as a group.

Can I choose which projects I help with?

Yes. The Institute for Clinical and Applied Health Research undertakes a wide range of projects, which focus on different health and care issues. You can choose which projects you work with, based upon your own interests and experience.

Our main research areas are cancer (early diagnosis and management), primary care, palliative care, alcohol and addictions, pregnancy and maternal health, and living with long term conditions (such as dementia, breathlessness and heart disease).

We also want to hear your views about the type of projects that we do.

Can I talk to other members of Involve Hull before I decide to join?

Yes. Our members are friendly and supportive. They enjoy taking part in research and are happy to share their experiences with you to help you decide whether to join our network. Our researchers are also very happy to speak with you informally before you decide whether you would like to take part.

If I share a negative experience will this affect my future care?

No. It is very important to understand that sharing any negative experiences you have had with the health and care system will not affect your future care. In fact, sharing negative experiences can be a very important way of improving research. It can help researchers understand where things do not always work very well and can lead to changes to services. Sharing positive experiences can also help us understand where things work well and what we can learn from examples of good practice. Anything that you share with us will be treated confidentially and anonymously. We will never link your name or contact details to anything that you tell us.

What if I don’t want to take part anymore?

You can decide to leave the network at any time. Just let us know if you no longer want to be involved. We are grateful to you for giving your time to help us with our research but recognise that your circumstances might change.

Contact

If you are interested and want to find out more, you can complete an online form, or send us an email. We will get in touch with you and answer any questions.

Read about how we protect your personal information.