Meeting the terms and conditions of funding bodies
Patient involvement is increasingly a criterion for the funding of scientific research. But the requirements set by funding bodies on involvement and the weighting of these conditions during the award procedure vary considerably.
More and more funding bodies have research proposals assessed from the patient’s perspective by a committee of patients. Patient involvement is also considered in the ethical review by a Medical Ethics Review Committee (METC). You can read more about this in the article Patient involvement when submitting the METC application (in Dutch).
Do not wait for a patient committee’s assessment, but talk to patients well in advance. Various patient organisations make it possible to get patients to provide advice on your research proposal, even before you submit it for funding. However, keep in mind that more and more patient organisations are setting conditions for their involvement, because it is time-consuming to set this up properly. Contacting them early (i.e. at least a few weeks before the grant application deadline) will prevent disappointment and increase the chances of maximum return.
An example of this is the Experts by Experience Group of the Harteraad Patient Organisation. Also see the section ‘Structuring patient involvement’ for tips on how to set up involvement at an early stage of your research.
Consider patients’ questions and needs: has the patient organisation drawn up a knowledge or research agenda? Perhaps there is a patient representative who would like to draft a research proposal with you for a knowledge question that appears on their research agenda.
Working methods are not uniform, but in general patients assess research on three aspects:
Relevance
- Does the research contribute to the societal participation of patients?
- Does the research question meet the needs of patients?
- Does the research improve quality of life/care?
Feasibility
- Is the burden on patients in the study acceptable?
- Are the risks of participating in the study clearly defined?
- Is the study feasible?
Patient involvement
- Are patients adequately involved in the various phases of the study?
- Does the study take diversity and representativeness into account?
- Has the involvement been budgeted in the research proposal?
The Association of Collaborating Health Foundations (SGF) has drawn up a form that enables you to assess research applications from a patient’s perspective. Many health foundations use this form or a variant thereof.
Take a look at the SGF form (in Dutch) for assessing research proposals from a patient’s perspective. This will give you an idea of the themes that patients – and therefore also the health funds – consider to be important. This will enable you take them into account at an early stage of your research design.
Also take a look at SGF’s template for writing a Dutch version of a research proposal (in Dutch).
Not all parts of the form are equally relevant to all types of research.
There is no uniform way in which the various funding bodies deal with assessment/input by patients. The importance they attach to it also varies. Sometimes the same funding body uses a different method per programme or grant round, depending on the type of research.
Many funding bodies now officially consider the patients’ standpoint in addition to the scientific perspective. Increasingly, only research that is rated as being at least sufficient from the patients’ standpoint is eligible for funding.
Scientific reviewers at ZonMw assess the quality of the research proposal in terms of content. Members of the patient reviewers panel assess the relevance, feasibility and degree of patient involvement. The independent programme committee (often having a patient member) compares the two assessments. Research proposals must achieve at least a ‘sufficient’ classification on both aspects.
It is not possible to describe the specific procedures of the various funding bodies here. For additional information about the specific assessment of your research, please contact the relevant funding body.
As an inspiration, here is some information on patient involvement from a few funding bodies (in Dutch): ZonMw (Netherlands Organisation for Health Research and Development), KWF (Dutch Cancer Society), Hartstichting (Netherlands Heart Foundation), Alzheimer Nederland.
Patient involvement as budget item
Patient involvement costs money and therefore deserves serious attention when drawing up the project budget. The following items should at least be considered:
Time spent on consultations and the preparation for these
If patients are part of a project or research team, or a panel, then they should get a standard hourly or other reimbursement. This does justice to the investment of time and is also a token of appreciation. An hourly allowance is usually not necessary for an occasional meeting, such as a focus group or interview. In these cases, an attendance fee, gift voucher or other token of appreciation will suffice.
Time for additional activities to document the collective patients’ standpoints (for example, for a membership consultation by the patient organisation).
The Netherlands Patients Federation has drawn up guidelines for reimbursements to patients (in Dutch). You can find information on the maximum amount allowable as volunteer reimbursement (in Dutch) on the Dutch Tax Administration’s website. You can follow the government guidelines for the maximum remuneration payable for participating in a meeting.
- Travel expenses (for public transport or per km if patients are dependent on transportation by car)
- Parking costs
- Other expenses, depending on the requested input
INVOLV provides training activities for researchers (in Dutch) who want to become more competent in patient involvement. Consult the funding body to find out whether you can include the costs for such training activities in the project budget!
Medical Ethics Review Committee
Patient involvement is also considered in the ethical review by a Medical Ethics Review Committee (METC). You can read more about this in the knowledge database article Patient involvement in the METC application (in Dutch).