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Cooperating with patients

At UMC Utrecht we want to work together in a structural way with patients and their families when it comes to healthcare, education  and research . Our goal is to make decisions together, so that we can be in line with patients’ needs, expectations and possibilities. In our approach we work closely with a network of patients and caregivers as well as the UMC Utrecht Client Council.

Watch the animation 'Together we make a difference'.

Together we make a difference

Patients’ knowledge and experience are crucial for us to keep improving and innovating. Because care is only good if our patients experience it as such. To make both our patients and our employees even more aware of this, we started in 2022 with the campaign Together we make a difference . In 2023 we pursued this campaign with two topics: ‘We want to get to know you so we can give you the care that suits you’, and ‘How do you help patients who find it difficult to read and write ?’.

Bringing offer and demand for patient experience together

We actively involve patients in decisions about the way we organize healthcare, scientific research, and education. To bring the demand for patients’ experiential knowledge and the offer thereof together, we set up the Bureau for Patient Input (BPI) in 2022. In 2023 the BPI received 72 requests for experiential knowledge. These pertained for example to the reading and improvement of a request for a study of type 2 diabetes, looking at real estate and building plans for Wilhelmina Children’s Hospitals (WKZ), and giving input on a call script for patients who are on a waiting list. In addition, about twenty patients were involved in 2023 in making plans for our Healthcare of Tomorrow program.

Encouraging patients to share their experience

To encourage patients/family members to defend their own interests, the BPI has developed a course for patient partners. The course looks at questions such as:what is patient participation, how can I participate effectively, how does UMC Utrecht work, and how can I share my (experience) knowledge in an optimal way? In 2023 we gave this training four times to a total of 48 patients or their family members. Participants rated the training with an average score of 8.4.

Support for patients who hare these experiences

At patients’ request in 2023 we organized two afternoon sessions for patient partners, people who share their experiences and think along with UMC Utrecht. It gave them the chance to meet, get to know each other, and hear about new initiatives. Attendees rated the afternoon with an average score of 9. Patient partners brought up their own topics that they wished to discuss. One of these were functional illiteracy. As a result we invited a coach and a language ambassador from the ABC Foundation. They shared their experiences and gave tips and advice on how to communicate with people who find it difficult to read and write. These insights can be used by patient partners in projects where they are asked for their input.

Support for employees in cooperation with patients

In a basic e-module we introduce employees to the notion of cooperation with patients in healthcare, education, and research. In 2023 we had 200 employees who completed this e-module on Patient Participation. An e-learning module aimed specifically at researchers looks at patient participation in research. 93 researchers followed this e-learning in 2023 in Dutch, and 42 in English.

We’d like to get to know you

To support our healthcare professionals, engage the dialog with patients, and offer personalized care, there is a questionnaire ‘We’d like to get to know you’’ / ‘We’d like to get to know you (junior)’’ (for patients under 18). Via the questionnaire patients can for example indicate what they consider to be the most important activities, things that worry them about their health, and what they expect from an appointment/treatment.

In 2023 over 53% of the adult patients and over 30% of the parents/children filled in the questionnaire. In general, experiences with the questionnaire - for patients and for healthcare professionals - are positive. Patients indicate that the questionnaire helps them to prepare properly for their discussion. For healthcare professionals, the questionnaire gives concrete leads that help them to give tailored information, establish a good relationship with a patient, and provide care that is as personalized as possible.

Studying cooperation with patients

In January 2023 we appointed a professor in patient and public participation and started with research in this field. Two studies on participation in healthcare are currently under way. We are evaluating the implementation and functioning of the questionnaire ‘We’d like to get you know you’ at UMC Utrecht. And in the neuro-oncology section we are studying ‘existential treatment’ as a form of patient participation in healthcare. We are also studying cooperation between academically trained researchers and ‘family-researchers’ via self-reporting and interviews in the scope of a project on housing projects for people who are prone to psychoses, which was initiated by family members. Finally, we are studying the impact of new hospital policy that aims to stimulated more patient participation. We look at case studies to see how researchers tackle this and how patients experience it.