Shared Decision-Making benefits all patients

Studies on the implementation of a communication process

Doctors and patients making treatment decisions together benefits patients as well as the healthcare system in general. CAPHRI PhD candidates Ruben Sars and Romy Richter are convinced of this. They are both conducting research aimed at improving and implementing this communication process, called Shared Decision-Making. Their focus is on people with low health literacy. “There’s still a lot of progress to be made in that area”, says Ruben.

People with low health literacy are not a homogeneous group, the PhD candidates explain together. Having difficulty with reading and writing may be a reason, as well as having a migration background or a low socio-economic status. “About 28 per cent of the Dutch population has low health literacy. And almost half of the population has low to average health literacy”, says Ruben. But what does that mean in practice? “The idea is that you understand what your doctor is telling you and properly understand medical information. This group of people struggles with that. They also find it difficult to make active choices for their own health and often don’t dare to ask questions”, explains Romy. During her research master’s in Health Sciences in Maastricht, she already did research on shared decision-making, which she has continued as a PhD candidate. Her PhD research consists of two projects, one of which is funded by ZonMw.

Collaboration

The ZonMw project revolves around a Shared Decision-Making process in which doctors and patients first discuss treatment options together. They also discuss the advantages and disadvantages of these options (and, finally, they discuss what matters most to the patient; this is what Romy’s second project focuses on). In addition to a literature review and an analysis of Dutch decision aids, the study involves focus groups consisting of doctors, patients and experts. For this part, Romy is collaborating with the Netherlands Institute for Health Services Research (Nivel), the Dutch Centre of Expertise on Health Disparities (Pharos) and the Netherlands Patients Federation. “The research is still in progress, but it’s clear that Dutch health care is still sometimes paternalistic. We often see that doctors think they’re doing a good job, while the patients in the focus group feel differently. We’ve also found that patients often understand well-explained information better than doctors expect”, says Romy.

Project: Effective strategies to better involve patients with multimorbidity and limited health literacy in decision-making in general practice
Period: 2022-2026
Funding: ZonMw (Kennisprogramma Huisartsgeneeskunde)
Project website

Contact
Ruben Sars
ruben.sars@maastrichtuniversity.nl

General practice

That’s also Ruben’s experience. “Patients’ wishes are not always taken into account”, he says. Ruben trained as a neuropsychologist and was working as a researcher at the Amsterdam University Medical Centre when his eye fell on this vacancy at CAPHRI. “I had previously worked in Leiden, where I did a lot of research with patient populations. That’s why this PhD research appealed to me. My focus is specifically on people with low health literacy who have multiple health conditions (multimorbidity). Shared Decision-Making is very important for them. What are the effects of the different treatments, for example, and which treatment should be prioritised? How can their quality of life be improved?”

Ruben’s research focuses on general practice, where an average of two-thirds of patients who come in for consultations have multiple health conditions. Various organisations are participating in the study, including Nivel, the Netherlands Patients Federation, the Dutch College of General Practitioners (NHG), health insurance company CZ and twenty general practices in Maastricht and Amsterdam.

Current situation

Ruben began his research in February of this year. The first step is to assess the current situation in the twenty participating practices by observing consultations. Next, he will conduct focus groups with general practitioners, patients and academics. “Shared Decision-Making is usually about hospital care. This study wants to co-create a solid Shared Decision-Making intervention for general practice with all stakeholders. We also have a patient panel that will represent the target population throughout the study. This way, the people it’s about can discuss what is going well and what isn’t. After that, we want to test the intervention we’ve developed together in practice. In hospital care, this often involves an e-learning course, but we have yet to decide what to do for our intervention”, says Ruben.

What is certain is that shared decision-making can be promoted by presenting information in a simple way, also by using illustrations. “Simple is better”, agree Ruben and Romy. Finally, they emphasise that Shared Decision-Making comes with better patient compliance and fewer unwanted/unnecessary treatments. And that, they say, will not just benefit patients with low health literacy, but all patients.

Text: Karin Burhenne
Translation: Emdash
June 2022

Project: Involving all patients in decision-making. How to improve ‘option talk’ and risk communication in general practice for patients with limited health literacy?
Period: 2021-2022
Funding: ZonMw (Kennisprogramma Huisartsgeneeskunde)
Project website

Project: Improving patient-centered care in oncology, an implementation study of a conversation tool.
Period: january 2021- April 2023
Funding: Citrienfonds
More information (in Dutch)

Contact
Romy Richter
romy.richter@maastrichtuniversity.nl

Involved partners and collaborations

Project: Effective strategies to better involve patients with multimorbidity and limited health literacy in decision-making in general practice

20 general practices in Maastricht and Amsterdam.
CZ: Health insurance company
NHG: Dutch College of General Practitioners
Nivel: Netherlands Institute for Health Services Research
Patiëntenfederatie Nederland: Netherlands Patients Federation

Project: Involving all patients in decision-making. How to improve ‘option talk’ and risk communication in general practice for patients with limited health literacy?

Nivel: Netherlands Institute for Health Services Research
Patiëntenfederatie Nederland: Netherlands Patients Federation
Pharos: Dutch Centre of Expertise on Health Disparities

Research team