Writing a research proposal

For your research proposal to have real added value, it is important to involve patients as early as possible. Contact patients or patient organisations at an early stage, so that patients can still put forward ideas while the proposal has not already been finalised.

Keep in mind that patient organisations are increasingly setting requirements in terms of how they want to be involved and the time they require. See, for example, the criteria set by the Dutch Depression Society (in Dutch).

Communicate clearly. Explain how a research proposal is written. Also make it clear that the application may not be successful.

Here too, it is important to properly coordinate everyone’s role with the patients involved. For which aspects or parts will they be expected to provide input? And in what way? Patient input can, for instance, be of added value for the following aspects:

• objective
• patient and other outcome measures
• logistics
• patient information
• dissemination
• implementation

Also give patients the opportunity to indicate what they themselves would want to contribute thoughts on. A tool that can help with this is 'Beoordelingscriteria van onderzoeksvoorstellen door patiënten' (Truus Teunissen) (in Dutch).

One option for drawing up a research proposal is to approach a patient organisation for collaboration. Most patient organisations already have much experience in this area. However, more and more organisations are setting conditions for their involvement.

There are also other ways of involving patients in drafting a research agenda. These include, for example, a department’s or organisation’s patient panel or an active group of advocates in the region. Alternatively, consult patients through a focus group.

These alternatives are particularly interesting if you wish to involve a specific patient group that is underrepresented in the patient organisation or if there is no patient organisation for this patient group. This could be the case if you want to conduct research with children or the elderly on a specific type of disorder, or for prevention research.

Also see De juiste ervaringsdeskundigen vinden (Finding the appropriate experts by experience).

An Example: the Harteraad Patient Organisation
An example of patient involvement in this phase is the work of the Experts by Experience Group of the Harteraad Patient Organisation. This group is composed of experts by experience with cardiovascular diseases. Researchers can consult the group for advice before they submit their research proposal for funding. They can provide advice on relevance, communication and safety for the participants.

If you wish to know more on this type of involvement, consult Harteraad’s website.  

Tip: If you have children participating in your study, adapt your communication to their perceptual world. This can be done, for example, in the information letters. The website Kind en Onderzoek (Children and research) (in Dutch) provides tools and tips for communicating with children. Consult them on the reader-friendliness and comprehensibility of your letters. Additional information on the involvement of children can be found on the De juiste ervaringsdeskundigen vinden page (Finding the appropriate experts by experience).

You are also advised to check the grant conditions of the fund to which you are going to submit your application well in advance. The grant conditions often state how patients are to be involved in this phase and how they will assess the proposal.

The conditions will differ per fund and programme. It is therefore important to always check this carefully.

Additional information on patient involvement and grants can be found on the Omgaan met voorwaarden van subsidiegevers page (Dealing with funding bodies’ conditions).

The joint research proposal will hopefully be the kick-off for long-term collaboration in the research project and perhaps even beyond.

Use the design phase to draw up a plan together with the patients or patient organisation for involvement in the follow-up of the research. You will of course include these plans in the research proposal.

The Participatiematrix (Involvement Matrix) is a good source for obtaining a better understanding of the ways in which you can to put arrangements in place with patients for involvement in the project.

Another good starting point is the book Zeggenschap in wetenschap (in Dutch) (‘Having a say in science’) by Tineke Abma and Jacqueline Broerse (2007). The book provides an action plan for setting up involvement together: 

• Preparatory work and exploratory phase – includes creating support and starting collaboration with patients or patient partners
• Refinement – drawing up a list of topics from the individual parties; this must at least include patients
• Prioritisation or assessment – identifying criteria for weighing topics for each party and ranking the topics in order of importance
• Connecting and dialogue – initiating dialogue between different parties; this must at least include patients
• Programming – drawing up an integrated agenda and turning it into an action plan
• Implementation – defining and executing specific projects/activities

The FIRST model is also useful here. This model provides tools for structural partnerships between patients and researchers in clinical and medical research (Hewlett et al. 2006; de Wit et al. 2015).

In the section voldoen aan voorwaarden van subsidiegevers (meeting the requirements of funding bodies), you can read how funding bodies assess patient involvement in the writing of your research proposal and what requirements they set for patient involvement in the rest of your project. It also describes how the patients’ councils of health funds and other funding bodies assess research proposals.

As of March 2023, medical ethics review committees (MERCs) have been asking researchers how they collaborate with patients in their research. You can read an explanation of this new method used by the CCMO (Central Committee on Research Involving Human Subjects) in the knowledge base article Patiëntenparticipatie bij de METC-aanvraag (in Dutch) (Patient involvement in the MERC application).

Contrary to popular belief, patients provide valuable input to all types of research and in all phases of research, even though their input is more apparent in applied and clinical research. In these types of research, patients are able to contribute their thoughts on relevance, objectives and patient-related and other outcome measures.

But the input of patients on relevance and objectives in fundamental and translational research can also be important. Moreover, contact with patients inspires researchers and keeps them focused on ‘why they are doing it’.

The Rheumatology department of the Sint Maartenskliniek at Radboud UMC has gained experience with this in recent years.