PPI Toolkit for Researchers

Involve people with lived experience of CDKL5 Deficiency Disorder in your research

Involving people who have lived experience of a CDKL5 Deficiency Disorder (CDD) in your research is called Patient and Public Involvement (PPI), and it can greatly improve the quality and relevance of your work.

This page provides you with the information you need to help you to plan and deliver your PPI activities at every stage of your research project. It is important to note that involvement is not the same as recruiting patients and their families to be a part of a study or a trial. Involvement means actively co-designing, working with and considering the opinions and experiences of people who are affected by CDD on a daily basis whilst planning and delivering your research project, to improve the quality and relevance of your work.

Here at CDKL5 UK, we can help you with your PPI planning and activities. Once you’ve planned how you want to involve patients and their families, we can connect you with our community of dedicated CDKL5 Research Champions. We can also help with advertising and recruitment for your study or trial once it’s up and running. Drop us an e-mail today to get started.

If you’re a person who has lived experience of CDD who is looking to get involved in CDKL5 research, click here.

Participation, engagement and involvement can all add value to your research.

Participation

Participation is where patients take part in a research study (for example, a clinical trial). They are the subject of the study and the research is being done to them, not with them.

Engagement

Engagement is where information and knowledge about research is shared with the public and the CDKL5 patient community.

Examples of engagement include, but are not limited to:

Lab tours
Blogs and Interviews on the CDKL5 website
Presentations at Family Days and Events, both in person and online

Involvement

Involvement is when people who have lived experience of CDKL5 – patients, family members and carers – use their experiences of being affected by CDKL5 on a daily basis to help shape research, so that it is carried out with or by patients and their families, rather than to or for them. You can consult, collaborate or partner with patients and their families at ALL stages of your research project, from the initial idea, to research planning, to the dissemination of research results.

Examples of involvement include, but are not limited to:

defining your research question
planning and designing your research
developing patient facing documents in Plain English (Lay) language that is easy to understand to non-scientists
monitoring and disseminating progress and research results

How does working with CDKL5 UK and involving people with lived experience of CDD benefit you, the researcher?

Funding applications

Involving people with lived experience of CDD will improve the relevance and quality of your research, resulting in a stronger funding application.

Ethics

Working with people with lived experience of CDD will highlight any ethical or sensitive issues that need to be mitigated, saving time and money when issues or improvements can be made from the beginning. This will help if your research needs to go through ethical approval. Involving people with lived experience also increases transparency about how public funds are spent.

Impact

People with lived experience of CDD can help you to better understand, articulate and communicate your research’s potential patient and family benefit, and identify meaningful and impactful study outcomes.

Quality

Involving people with lived experience of CDD encourages ongoing discussion about the best way to approach various aspects of your research project from the beginning – what matters most to the people the research is for, what is most important, and why. This enables continuous reflection, challenges assumptions, and improves quality.

Relevance

Working with people with lived experience of CDD increases the relevance of research by focusing on what is most important to them, unmet needs in the community, and what will have the greatest impact for people with a diagnosis of CDD and their families.

Recruitment

By involving people with lived experience of CDD in research design and in the development of patient information sheets (PIS) and consent forms, you can improve the acceptability and feasibility of the study, saving time and money.

Motivation

Involving people with lived experience of CDD can keep your research project focused on what matters most to the CDKL5 community, and can increase your team’s motivation. Lab-based research in particular can be quite disconnected from the people the research is benefitting, so it’s valuable to be able to connect with people who’s lives will be better because of the work you are committing your time to.

NIHR INVOLVE Recommendations and Guidelines

We recommend you refer to the National Institute for Health and Care Research (NIHR) INVOLVE UK Standards for Public Involvement [click here]

It may also be useful to read the INVOLVE values & principles summary which highlights the six values and principles of public involvement in research in the UK.

As per NIHR Guidelines, there are associated costs that need to be considered and budgeted for when planning patient and public involvement in research. You can read more about budgeting and payment for involvement in research, here.

Choosing how to involve people with lived experience of CDD

Surveys

You can work with the team at CDKL5 UK to put together and disseminate a survey to the network of CDKL5 Research Champions. This can be a set of questions to gather opinions on a research idea, question, design or method, or to gather perspectives and experiences. It is important not to confuse this survey with a survey that will be conducted as part of your research project. You generally do not have to offer payment for this type of involvement.

Interviews

In-depth conversations with people who have lived experience of CDD, such as parents, carers and other family members, means you are able to gather valuable information. These interviews can be conducted over Zoom – online interviews are convenient for family members and carers who may find travelling to a location difficult, and they save time and money. These interviews can be informal conversations, but it’s always helpful to record the conversation, as long as you have permission from the person you are interviewing. If you would prefer a face-to-face interview, it is recommended you cover the interviewees travel expenses, which could include food, petrol, train travel, accommodation or carer needs. If taking place online, NIHR recommends a payment of £25 per hour or equivalent voucher, per person for participation in focus groups. You can work with the team at CDKL5 UK to organise and facilitate these interviews.

Focus Groups

A focus group is a small meeting with a recommended group of around 6-8 volunteers. The discussion is planned and you, the researcher, can facilitate the group or you can work with the team at CDKL5 UK. Focus groups can be as little as an hour long, which works well online, or if in-person, these meetings can be up to a full day. Be sure to take into consideration the needs of each individual participant if they are attending an in-person meeting, such as access needs or dietary requirements. It is recommended you cover the interviewees travel expenses, which could include food, petrol, train travel, accommodation or carer needs. If taking place online, NIHR recommends a payment of £25 per hour, or equivalent voucher, per person for participation in focus groups. You can work with the team at CDKL5 UK to organise and facilitate these meetings.

Patient Representatives

These are people with lived experience of CDKL5 who sit on a project team or steering group, alongside professionals. It is recommended there be at least 2 patient representatives, which can include a member of the team at CDKL5 UK as a patient organisation representative, representing the needs of the entire CDKL5 patient and family community. The team at CDKL5 UK are experienced in PPI and have worked on a number of different CDKL5 research projects over the years. We can also connect you with the most suitable volunteers to be a part of your project team or advisory group. Expenses and an optional honorarium are paid to patients at an equal rate to other steering group members.

Advisory Panels

This is a group of people with lived experience of CDD who provide feedback and new perspectives and experiences over a longer period of time. Expenses and an optional honorarium are paid. The team at CDKL5 UK can connect you with the most suitable volunteers to sit on your panel.

Reviewing Documents

One of the easiest and most common ways to involve people with lived experience in your research project is to ask CDKL5 Research Champions to review project documents, such as Plain English (Lay) Summaries, patient information sheets, consent forms, Plain English presentations for family conferences or events, and other similar documents. NIHR recommends a payment of £12.50 per hour, or equivalent voucher, per person for reviewing documents.

More information about NIHR Payment Recommendations

Payment, in the form of covering expenses or giving a voucher as a thank you, shows volunteers that you value and respect their time and efforts. It is easy to budget for this during the funding application stage of the research cycle. Be in touch with the team at CDKL5 UK if you need any help or advice when budgeting for involvement costs.

You can find more information about when and how much to pay people with lived experience for their involvement in your project, here.

Email Beth Vaughan, CDKL5 Development and Engagement Champion, at bethan.vaughan@curecdkl5.org.uk for more information about how you can work with CDKL5 UK and the dedicated CDKL5 Research Champions on your research project.