Help shape sepsis research
Patient and Public Involvement and Engagement (PPIE) gives people affected by sepsis the opportunity to use their lived experience to help shape research.
You don’t need to be a researcher or have any additional qualifications. Your experiences, views, questions and ideas are valuable and can help researchers understand what matters to people affected by sepsis.
PPIE for contributors can involve:
- Helping identify priorities for sepsis research.
- Developing research questions and ideas.
- Reviewing patient information, questionnaires and consent materials.
- Advising on how research is explained and how participants are recruited.
- Taking part in research advisory or steering groups.
- Sharing experiences and perspectives to help researchers understand what matters to patients, families and carers.
- Helping researchers interpret findings.
- Helping share research findings with patients, families and communities.
PPIE is not the same as taking part in research as a participant. However, you may also choose to participate in a research study separately.
REGISTER YOUR INTEREST
If you have lived experience of sepsis, you can register your interest in joining the UK Sepsis Trust’s PPIE network.
Once registered, we’ll share upcoming opportunities so you can choose those that are right for you based on your interests, experience and availability.
There’s no obligation to take part in every opportunity, and you can withdraw from the network at any time.
WHY GET INVOLVED?
Taking part in research can help you:
- Use your experience and voice to shape the future of sepsis care.
- Turn something difficult into something positive.
- Share your lived experience with other with similar experiences in a supportive and understanding environment.
- Learn more about research and know that your contribution is valued.
What can you expect?
PPIE should be a two-way partnership. Researchers should value your experience, listen to your views and provide the information and support you need to participate.
You should:
- Be treated with respect and as an equal partner.
- Receive clear information about what is expected of you.
- Have opportunities to ask questions and share your views.
- Be given appropriate support and preparation.
- Receive feedback on how your contribution has influenced the research.
- Have your time and expertise recognised and appropriately reimbursed.
- Be able to say no, take a break or withdraw from an activity if you need to.
Protect your wellbeing
Sharing your experience of sepsis can be rewarding, but it can also bring back difficult memories or emotions. Your wellbeing should always come first, so it’s completely okay to set boundaries or take a step back if it doesn’t feel right for you.
We have guidance available to help you look after your wellbeing before, during and after PPIE research.
FAQs
Am I eligible to take part?
Anyone with lived experience of sepsis – whether that’s patients, carers, family members, or members of the public – can get involved in PPIE. You do not need to be a researcher or have any additional qualifications.
Will I receive financial compensation for taking part?
Your time and expertise should be recognised. Research organisations should explain payment arrangements before you agree to take part and cover reasonable expenses where appropriate.
If you receive benefits or have other circumstances that could be affected by payment, you may wish to seek advice before accepting payment.
Are there other ways I can support UKST?
If you decide that taking part in research isn’t right for you, there are many other ways you can support UKST. From donating to fundraising or volunteering, you can choose an option that suits you.
What happens before I take part in PPIE?
Before agreeing to take part, take a moment to consider whether the opportunity feels right for you. You may find it helpful to ask for clear information about:
- What you will be asked to do.
- How much time it is likely to take.
- Who else will be involved.
- What support is available if the discussion feels difficult.
- How your contribution will be used and shared.
If you’re unsure about taking part, we’d recommend speaking to one of our Support Nurses first.
What happens if I need to take a break during a research session?
During a session, you can take a break, ask to pause, or let the facilitator know if you need support. You don’t have to answer every question or share anything you feel uncomfortable discussing.
What happens after I've completed a session?
Afterwards, give yourself time to reflect and decompress if you need to. You may find it helpful to talk to someone you trust, step away from the topic for a while, or do something calming.
Remember, you are sharing your own experience. You are not expected to represent everyone affected by sepsis or to have all the answers.
I'm experiencing some post-sepsis symptoms. How will I be supported?
If you experience ongoing post-sepsis symptoms, you can ask for reasonable adjustments to make involvement work for you.
Fatigue, difficulties with concentration or memory and other ongoing symptoms can affect how you participate. Let the research team know what would help you take part comfortably.
If you’re unsure about taking part, or find it difficult to take about your experience, our Support Nurses are here to help. They can discuss your options with you, help you decide if participation is right, and talk through any support or adjustments you might need.