Children’s hospices and NHS organisations are crucial to the development and delivery of research in paediatric palliative care. In this resource you will find information about how you as an organization delivering paediatric palliative care can become involved in supporting research in this area.
A useful starting point is this webinar that addresses the key question of ‘what is research and why is it important to paediatric palliative care?’, including a useful breakdown of what is meant by terms such as ‘research’, ‘audit’, ‘service evaluation’ and ‘quality improvement’.
Why taking part in research matters
Your role in supporting research as a site or participant identification centre
You may be asked to support a research study either as a research site or participant identification centre. It is important to understand the difference between the two roles.
If you are asked to be a research site then your key responsibilities would include:
- demonstrating to relevant approval bodies and sponsors that the location is suitable for the research;
- being aware of all research activity being undertaken in or through the site;
- ensuring that the roles and responsibilities of individuals at the site and any collaborating parties are agreed and documented for individual research projects; and
- satisfying themselves (e.g. by taking assurances from others in a position to give them) that, if expected or required, the research has approval from a research ethics committee and any other relevant approval bodies before research participants take part (including indirectly, through the involvement of data or tissue that is likely to identify them).
- make information available about their capacity and capability to support different types of research so that sponsors can tell quickly where they should place their studies to best effect
Participant Identification Centre
By contrast, if you are asked to be a participant identification centre your core responsibility would be to identify potential participants to take part in the study. Other responsibilities would include:
- Identify potential research participants for a research study by processing personal data (e.g., through carrying out a search of a patient records database to identify individuals that meet a study’s eligibility criteria.
- Follows the sponsor(s) instructions in identifying potential research participants.
- Directs these potential participants elsewhere (e.g., to the study research team) without undertaking any further research activity for that study.
- Make information available about their capability and capacity to ensure they have capacity to participate as a participant identification centre.
The key comparison between a participant identification centre and a research site is the former ONLY identifies potential participants for a study. By comparison, a research site is responsible for further research activity including taking informed consent from participants.
Research governance and delivery
Approving research studies as an organisation
It is important that as an organization you have a process in place to consider requests to participate in research. To do so, it is likely to be necessary for you to develop a panel of members who would be able to discuss and review requests for participation received by your organization. For information on how to establish a research panel please click here.
Once you have a panel established, it is then useful to think about the process you might want to develop. Factors such as how often the panel meets and who Chairs the panel are likely topics to consider. You may also want to think about the criteria to which you will review applications against. Key considerations may include:
- Has the study team received the necessary ethical approvals.
- What other research are you as an organization currently involved in, do you have capacity to take on the proposed study?
- What are the study team’s expectations regarding sample and recruitment? Is this something you feel is feasible for your organization to commit to?
Dr Debbie Box at Martin House Hospice has kindly put together a useful document detailing the research consideration process in place at Martin House.
Patient and Public Involvement
As an organization you might be interested in drawing on the perspectives and experiences of the young people and families you support to set or develop a research agenda. Working with young people, parents, and families to shape and develop research is broadly referred to as Patient and Public Involvement or PPI for short. You can find a broad overview of PPI and the principles of meaningful involvement here.
Helpful links to PPI resources
- The UK Standards for Public Involvement in Research can help guide you improve the quality and consistency of your PPI activity.
- NIHR guidance on how to involve patients and the public in your research activity.
- NIHR guidance on reward and payment for involvement.
Advice on establishing a study or organization advisory board
Establishing a study or organization advisory board is a great way to ensure children, parents, and their families are at the heart of any research affiliated with the organization.
Key considerations when establishing an advisory board are:
- What would be the role and responsibilities of the group? Supporting to set the organization research agenda? Supporting the reviewing of research applications?
- What would be the characteristics of the group and how many people would you aim to recruit?
- Ways of working: how often would the group meet? Who would chair the meeting?
- How would group members be paid for their time and any expenses incurred?
This terms of reference template, and this example of the terms of reference from Martin House’s research panel will hopefully support you to think through these considerations.
This resource is produced by the CoPPAR network funded by the NIHR, you can find out more about CoPPAR here