How to involve patients in your research

Participation ladder

Patients can take on different roles depending on how they are involved in research. These roles can be represented using a participation ladder. The ladder consists of five levels, ranging from no involvement to patient-led research:

• Control: Patients and/or patient organisations commission the research and have control over its content and direction.
• Collaboration: Patients and researchers work as equal partners and often make decisions together. Patients can influence all aspects of the research. An example is including patients as members of a research steering committee.
• Advisory: Patients actively contribute ideas and provide feedback on research proposals but do not have decision-making authority. Examples include setting up an advisory group for a research project or a patient advisory panel within a research department.
• Consultation: Patients share their individual experiences and perspectives but are not involved in decision-making. Examples include asking patients to complete a questionnaire about the content of an information leaflet or inviting them to participate in a focus group.
• No involvement: Patients are involved only as research participants.

Not every level of the participation ladder is appropriate for every research project. Different roles may also be more suitable at different stages of the research process. A higher level of involvement is therefore not necessarily better. The most appropriate role depends on the type of research, its objectives and the stage of the research process.

The participatiematrix (in Dutch) is a useful tool for researchers and patients to determine together which role is most appropriate.

How can Longfonds support you?

Longfonds can support you with patient involvement in several ways.

Connecting you with patient experts

A patient expert is someone who can reflect on their own experience of living with a health condition, relate it to the experiences of others, look beyond their own condition and communicate these perspectives effectively.

Patient experts can contribute in various ways, for example by reviewing a research funding application or joining a project team. You can submit a request to Longfonds, which we will share in a private online community. Patient experts can then decide whether they would like to respond. Longfonds checks for potential conflicts of interest, and all patient experts have signed a confidentiality agreement to ensure that your information is handled appropriately.

Longpanel

The Longpanel (in Dutch) consists of a permanent group of approximately 1,400 people with lung disease who regularly complete questionnaires. We also invite panel members to participate in focus groups, research studies and interviews. Longfonds can distribute a questionnaire you have developed to this panel.

Support in setting up a patient advisory panel

A patient advisory panel linked to your research department can provide you and your colleagues with advice throughout the research process. Longfonds can support you in setting up such a panel.

Would you like more information or would you like to use one of these services? Please contact us at ervaringsdeskundigen@longfonds.nl.

Further information, practical tips and guidance

Resources in English:

• Engagement and participation in research | NIHR
• Public Involvement - Health Research Authority (hra.nhs.uk)
• A practical guide to patient and public involvement in lab-based research (NIHR)

Resources in Dutch:

• Participatiekompas
• Participatie (ZonMw)

Back to ‘What is patient involvement?’