There is a growing recognition that actively listening to experiences of patients/clients and their relatives can substantially improve the quality and safety of care, without major change processes being necessary. We call this patient/client participation.
The main challenge is to identify appropriate patients/clients for participation. This blog describes how to select the right participants.
By identifying appropriate patients/clients for participation a distinction can be made between:
The advantage of experts with first-hand experience is that they can share their unique experience of living with (a specific) disease and healthcare.
The advantage of representatives is that they can represent the interests of a particular patient group from a professional and representative’s point of view.
Organised patients are members of patient organisations that represent their interests. There are national, provincial and regional patient organisations. (National) associations are often organisations that focus on a specific disease. They have extensive knowledge of the care and treatment options for specific patient groups.
Often they are also aware of the paths to pursue by patients in home-care situations and they can share practical tips and experiences. Provincial or regional organisations like to actively contribute ideas about activities on a local level and their procedures are usually not linked to a specific disease.
The provincial or regional platforms are collaborations of patient and consumer organisations in healthcare. They look after the general interests of patients and consumers from an independent position. This way they can influence the opinion of health insurance companies, care providers and professional groups on healthcare quality and policies. Different organisations may join the platforms.
Non-organised patients of care institutions can be best reached directly by the care institution, for example through distribution of leaflets and posters in waiting rooms or - even better - by contacting patients directly in person.
It is also important to select the right form of participation.
| One expert having first-hand experience | One patient may provide sufficient information, or the quality of care is improved for one patient. |
| A random group of experts having first-hand experience | A group of patients willing to participate. If applicable, a selection can be made. |
| Sampling | Scientifically valid selection of participants to carry out results analyses. |
| Representative | Representatives of patient organisations represent their constituencies. |
| External | The patient/client perspective can also be conveyed by an independent person, like, for example, a mystery guest. |
Some patients or patient groups have particular characteristics that need to be taken into account when choosing the appropriate tool. Not all tools are suitable for all patient groups. Sometimes caregivers (providing informal care) are therefore more suitable for participation. They can also accompany or support the participating patient. These characteristics may, for example, include the following:
Below we have listed a number of criteria that may be used when recruiting patients or their representatives. These criteria are derived from the criteria developed by the Dutch Patient Consumer Federation (NPCF) for patient representation in panels. These criteria mainly apply when patients are actively involved in the development or implementation of improvement activities. To a large extent, these criteria do not apply to questionnaire surveys, for example.
While recruiting participants it is important to take the following points into account:
When involving patients it is important to inform them about their role and how they can contribute. Expectations should be clear from both sides. The role of the patient and whether or not additional support is required depends on the tool used.
Do you want to know more about patient participation and the tools you can use? Download the eBook 'How do you turn regular care into excellent care?'. Learn from practical examples how you can use patient participation to improve the quality and safety of healthcare.