RISC Amsterdam

Welcome

We are the RISC Amsterdam expert centre. We perform interdisciplinary and transdisciplinary research on health risk communication and decision making, and integrate scientific knowledge with policy and practice. The RISC expert centre is established at the Department of Public and Occupational and the Amsterdam Public Health research centre. We work closely with The National Institute of Public Health and the Environment (RIVM).

Questions? Feel free to contact us.

Amsterdam UMCLogo APH high res

 

News

See the summer issue 2018 of the popular scientific journal Skepter about health risks and risk communication (in Dutch).
https://skepsis.nl/skepter-covers/skepter-31-2-2018/

Information will follow

SELECTION OF MEDIA CONTRIBUTIONS (Recent selection about COVID19)

Tijdschrift Sociale Vraagstukken 26 augustus 2020; Communiceer beter over hoe je te gedragen tegen het virus.
https://www.socialevraagstukken.nl/communiceer-beter-over-hoe-je-te-gedragen-tegen-het-virus/

NRC 13 augustus 2020: Persconferenties geven is niet meer genoeg.
https://www.nrc.nl/nieuws/2020/08/13/elf-hoogleraren-persconferenties-geven-is-niet-meer-genoeg-a4008692#/handelsblad/2020/08/14/#116

Nederlands Dagblad 06-02-2021 Erken Twijfel en Zorgen Coronaprik
https://www.nd.nl/nieuws/nederland/1011747/erken-twijfels-en-zorgen-coronaprik

NRC 7 april 2021 ‘Suggestie gevaar rond AstraZeneca-vaccin gaat niet meer weg’ https://www.nrc.nl/nieuws/2021/04/07/suggestie-gevaar-rond-astrazeneca-vaccin-gaat-niet-meer-weg-a4038773

Parool 7 april 2021 Prikpauzes Astra Zeneca hadden voorkomen kunnen worden https://www.parool.nl/nederland/hoogleraar-prikpauzes-astrazeneca-hadden-voorkomen-kunnen-worden~b2b7c976/

FD 9 april 2021 Verschuivende coronaperspectieven zorgen voor verwarring.
https://fd.nl/economie-politiek/1379869/verschuivende-coronaperspectieven-zorgen-voor-verwarring-jjd1caiNWyYW?utm_medium=social&utm_source=email&utm_campaign=SHR_ARTT_20210410&utm_content=economie-politiek

AD 13-4-2021 Over vaccinatie
https://www.ed.nl/binnenland/weer-minder-vaccins-gezet-dan-gepland-verklein-aantal-groepen-met-voorrang~aaea6e35c/

NPO Radio 1: https://www.nporadio1.nl/nos-radio-1-journaal/onderwerpen/75218-2021-04-13-steeds-meer-60-plussers-zien-prik-met-astrazeneca-niet-zitten

NOS online 14-04-2021 ‘Openingsplan kabinet is inzichtelijker dan routekaart, maar hopeloos dubbelzinnig’
https://nos.nl/artikel/2376752-openingsplan-kabinet-is-inzichtelijker-dan-routekaart-maar-hopeloos-dubbelzinnig

REFORMATORISCH DAGBLAD 1 mei 2021 Communicatie kabinet over corona kon beter

AD 28-5-2021 en Interview Live Nieuwsupdate; Prikken wat de pot schaft. https://www.ad.nl/nieuws/prikken-wat-de-pot-schaft-anders-sta-je-achteraan-de-rij-efficient-of-oneerlijk~a397138d/

NOS online 31 – 5- 2021 Astrazeneca weigeraars krijgen nieuwe oproep voor een ander vaccin https://nos.nl/nieuwsuur/artikel/2383099-astrazeneca-weigeraars-krijgen-nieuwe-oproep-voor-ander-vaccin

Nieuwsuur: Moet je zelf een vaccin kunnen kiezen? 31-5-2021 https://www.npostart.nl/nieuwsuur/31-05-2021/VPWON_1324231

AD 12-6-2021 Ben je een aso als je geen coronaprik wilt? https://www.pzc.nl/binnenland/ben-je-een-aso-als-je-geen-coronaprik-wilt-ik-word-door-vrienden-voor-gek-versleten~acf0102f/

AD 5-9-2021 https://www.ad.nl/binnenland/help-een-ongevaccineerde-aan-mijn-bed-een-patient-kan-altijd-zorg-weigeren~ac89643f/

Parool 15-9-2021 https://www.parool.nl/nederland/de-jonge-snapt-vaccinweigeraars-niet-en-krijgt-kritiek-nu-gaan-hakken-verder-in-het-zand~b7dc9245/

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About us

The research team

We are a group of senior and junior researchers supervised by professor Danielle Timmermans. We regularly welcome interns in our research group. By clicking on one of our photos you will receive more information about us and our research projects.

Mirjam Fransen

In curative and preventive health care, individuals are expected to make informed and shared decisions on e.g. participation in screening and vaccination programs, lifestyle changes, and treatment of diseases. This requires adequate health literacy skills, also defined as individual skills to obtain, understand, appraise and apply health related information to make informed decisions.

In my research program we gain insight in informed and shared decision making in curative and preventive health care and systematically develop and evaluate interventions for health care providers, citizens and patients, thereby taking into account diversity in health literacy skills. We are specifically interested in innovative strategies to support informed and shared decision making such as digital decision support tools, blended training programs, applied games, and new media.

In addition to this research program, I am actively involved as a teacher and coordinator in the Bachelor and Master programmes ‘Medical Informatics’ and ‘Medicine’. I am a member of the Educational Committee that controls and contributes to the quality of education in Medical Informatics, and as coordinator ‘Academic and Professional Skills Development’ I am actively involved in the development of the new Bachelor for Medical Informatics (MI-X).

Daniëlle Timmermans

I am a Professor of Public Health Risk Communication and supervise this research group. As of 2013 I am also Chief Science Officer Risk Communication at the National Institute for Public Health and the Environment (RIVM), where I developed and supervise a research program in risk communication. I further contribute to optimizing the practice of risk communication. As a psychologist, my research focus is on how people experience risks related to their health and safety, how they understand and use information about risks for their choices about these risks. The research originates from social and practical problems and is based on scientific theories from behavioural decision making. In this way our research can contribute to theories about risk perception and risk communication as well as to the solution of social problems.

https://researchinformation.amsterdamumc.org/en/persons/danielle-timmermans

Olga Damman

I work as a senior researcher in the field of risk communication and patient decision making. My research focuses on how to create balanced and understandable information for the public and for patients in particular. This information should help them to make informed decisions. It is increasingly expected from people that they take responsibility in making decisions about their health as well as about the types of healthcare they receive, for example in the process of Shared Decision Making. Adequate information is a key priority in such processes, or in other words, information that really helps to gain insight into medical risks and to weigh pros and cons of options.

My background lies in Social Psychology. I obtained my Master’s degree at the University of Amsterdam in 2005, and my PhD degree at Tilburg University in 2010. My PhD study, conducted at NIVEL, concentrated on the question of how comparative performance information about healthcare can be made accessible and understandable for the public.

Publications
2017
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2009

Show all publications of Olga Damman

Hanna Bomhof-Roordink

My name is Hanna Bomhof-Roordink. During and after the bachelor “Health & Life” and the research master “Lifestyle and Chronic Disorders” I enjoyed answering various research questions.

After that I started my PhD trajectory in the LUMC, department of Medical Decision Making, with Anne Stiggelbout and Arwen Pieterse.
My dissertation is about defining and measuring shared decision making between doctors and patients and then more specifically about cancer treatment. I am currently completing this.

Since May 2019 I am working as a postdoc researcher on the IDMscreen Scale project.

Valerie Eijrond

I was born and raised abroad and have an educational background in business and health. In 2017 I obtained my master’s degree in Health and Society from Wageningen University. My master thesis focused on the value of the diagnosis Lyme disease among patients with persistent uncharacteristics complaints. During my studies and internships, I became interested in issues occuring at the human-animal-ecosystem interface such as diseases that spread from animals to humans (zoonotic diseases). This requires a so-called ‘One Health’ approach, which is the combined effort of multiple disciplines to improve the health of humans, animals and ecosystems. In June 2017 I started my PhD project entitled: “Talk in Action! Towards a constructive dialogue between stakeholders on livestock-related zoonoses “.

Nida Gizem Yilmaz

In July 2017, I finished the Master’s programme Management, Policy Analysis, and Entrepreneurship in Health & Life Sciences at the VU University. Although my study was more focused on business-related topics, I did some internships in the domain of social sciences. As a graduate intern, I investigated the information-seeking behaviour of older Turkish cancer patients, and their technology acceptance. In December 2017 I started working at the Department of Public and Occupational. Currently, I’m working on the project ‘Optimizing decision support tools for older cancer patients’. In this project, I’ll investigate how existing online decision support tools can be optimized for older lung cancer patients and breast cancer patients.

Lorraine Landais

Since December 2017 I work as a PhD student at the department of Social Medicine of the VU Medical Centre on the CHOiCE project: Choosing the Healthy Option in a Choice Environment. I investigate which choice architecture techniques are effective to foster active choices and sustainable change in health behaviours among healthy individuals and individuals at increased risk for cardiovascular disease. The focus is specifically on physical activity and medication adherence. An example of a question within this research: ‘How can choice information about pros and cons be presented in an optimal way, so that people make a healthy choice?’. This project fits well with my background in Social Psychology.

Laxsini Murugesu

Since November 2018, I have been working at the Department of Social Medicine (Amsterdam UMC, location AMC) as a PhD student on the ZonMw project “Shared decision-making in integrated birth care”. At the VU University in Amsterdam, I completed my master in Health Sciences, specialising in Prevention & Public Health.

Thomas Stege

I am a multidisciplinary scientist, with a background in both social and exact sciences. I have joked occasionally about being the only psychologist in the world who likes mathematics. Years ago, I started studying chemistry, but never finished it. Afterwards, I completed a bachelor’s degree in Educational Science at the University of Twente, and a master’s in Cognitive Psychology at the University of Leiden. In March 2016, I started at the RIVM as a Ph.D. candidate, with risk communication on imperceptible occupational exposures as my research subject. Due to this research, I got involved with the RISC research group.

Inge Van Strien

I graduated as a Health Psychologist and since May 2019 I work as a junior researcher within the RISC research group of the Amsterdam UMC. I work on the project titles: “Personalised decision support systems in breast cancer care: integrating prediction modelling with user-centred research.” The aim of this project is to develop a personalized decision aid for women with breast cancer so that they can decide together with their doctor which treatment best suits their personal preferences. My focus within the project is on investigating the most appropriate way to communicate personalized survival rates and other risk information. Additionally, I also pay explicit attention to women with low health literacy.

Research

 

What is risk communication?

Risk communication deals with communicating about risks and benefits of, for example, industrial technologies, diseases and human behaviour for our health and safety. Risk communication as practice has different goals. The main goals are:

1.Helping people to understand the risks they face.
2.Fostering Promoting informed decisions about risks.
3.Encouraging people to minimize or prevent risks, changing behaviour.
4.Creating support and achieving joint decision-making.

Risk communication is a challange

One of the challenges concerns the different perspectives on the concepts of risk and risk communication.

Many (social) problems are examined from different disciplines and often different research methods are used. Disciplines such as epidemiology, toxicology, psychology and sociology all study the risks that that threaten our health and safety but do so in different ways using different theories and methods.

Risk is a multidisciplinary concept that is defined differently by these different disciplines. The technical, epidemiological definition of risk is the probability of a negative event or damage to things we value. The psychological and sociological definitions emphasize perception and social processes that determine what is seen as a risk. Risk communication is understood differently as a result of these different definitions.

Many people have difficulty understanding quantitative risk information. Following the guidelines below makes it easier for people.

Guidelines for communicating quantitative risk information

The best way to communicate risks depends partly on the purpose of the communication and the target group. In addition to information about causes, consequences and ways to control or reduce the risk, risk communication involves numbers and probabilities. Different formats are available for the communication of quantitative aspects of risks: verbal terms, numbers and graphical presentations. Verbal terms, such as “a large risk ” are often used, but may lead to miscommunication because the exact meaning is not clear. Most people therefore prefer to get risk information in numbers. However, these numbers have the disadvantage that people often find them difficult to understand.

When using numerical risk formats, two characteristics are important for optimizing risk communication: a concrete representation so that people can present it better and a simple representation to minimize misinterpretations of risk information. Furthermore, people prefer exact information because then it is clear what is meant.

The general guideline for providing technical information about risks is: “Be exact, make it concrete and keep it simple.” Ten do’s and don’ts are:

Be exact:

1.Quantify the risks as much as possible. Do not only give verbal descriptions (such as “very high risk”, “slightly raised” etc.) or colors (such as red for the high risk group). Verbal descriptions do not lead to an accurate risk perception and may lead to miscommunication.

2.If you use verbal descriptions, do so as neutral as possible. Be aware of the aim why you use it, for example for reassurance (“It is a low risk”).

Make it concrete:

3.Describe only risks that refer to concrete people. Thus means e.g. no percentages less than 1%, no broken numbers.

4.Preferably use frequencies. If necessary, translate literature data into this format. Don’t: “The risk of cardiovascular disease is 15%.” Do: “Of the 100 patients like you, 15 get a cardiovascular disease within 10 years.”

5.Make the reference group explicit and use the same reference group as much as possible. Thius means: “80 out of 100 people get better, 4 out of 100 people have side effects”.

6.Use the smallest possible denominator (i.e. the reference group) if the risks are expressed in frequencies. Don’t : “800 out of 10,000 people”. Do: “8 out of 100 people”.

7.Always use a time frame if available and preferably short instead of long time frames. That is better imaginable for patients. Thus mention the 10 year risk instead of the life time risk.

Keep it simple:

8.Use the same format as much as possible. Don’t: “80 out of 100 people get better and 4% have side effects”. Do: “80 out of 100 people get better, 4 out of 100 people have side effects”.

9.Keep the reference group (the denominator) the same if different risks are given. Don’t: 1 in 20 patients die and 1 in 8 patients experience complications. Do: 5 out of 100 patients die and 12 out of 100 patients experience complications.

10.Use visual support where possible. If you have explained someone’s numerical risk for a disorder in frequencies, you can, for example, show a population diagram.

 

Guidelines for developing risk information.

Risk communication must be tailored to the information needs of the public and include information that the public needs to know to make informed decisions. Perceptions of risk of, for example, chemical fires or cancer can be represented by a mental model. A mental model is a coherent set of beliefs and ideas that someone has about a risk, its effects and measures to reduce the risk. This model is formed by personal experience and information from different sources. To design good risk information, the information should be related  to the mental model of lay people and it should be clear where this lay model differs from that of experts.

Step-by-step plan for developing risk information:

  1. Construct an expert model of risks and measures to mitigate the risks based on scientific literature and interviews with experts from different knowledge domains.
  2. Explore the lay models using interviews (10-20) with non-experts (laymen).
  3. Identify worries, knowledge gaps, misconceptions, and typical lay ideas by comparing the lay models with the expert model.
  4. Based on the outcomes of step 3, prepare a questionnaire and administer it to a representative sample from the target group.
  5. Use the outcomes of step 4 to identify the most important information needs, gaps and misconceptions and consult experts. This forms the starting point for new risk information to be developed.
  6. Test and evaluate the new developed risk information and determine the impact on people’s knowledge, decision-making and behavior.

Risk is a multidisciplinary concept that is defined differently by different disciplines. The technical, epidemiological definition of risk is the probability of a negative event or damage. The psychological and sociological definitions emphasize perception and social processes that determine what is seen as a risk. Risk communication is defined differently as a result of these different definitions:

A technical approach to a risk is about risk factors and probabilities. For example, epidemiologists study risk factors such as high blood pressure increasing the chance of getting a cardiovascular diseases. Risk is the chance that someone will get a disease within a certain time frame, for example 20% chance of a cardiovascular disease. People often find this technical and numerical information abstract and difficult to understand.

The psychological approach relates to what the risk means to people: what are the causes and consequences, and what can one to prevent the effects? People find health risks they themselves have no influence on or are less familiar with, e.g. unknown infectious diseases, often more scary than the known risks of obesitas or smoking. People have a more or less elaborated mental models of all risks, the causes, the consequences and control measures to mitigate risks. These factors determine, besides the probability, what they think of the health risk and their behavior and decisions.

From a societal approach, risks are social constructs and shaped by societal influences. Nowadays we are concerned about all kinds of risks of substances from the environment while people were less concerned in the past. Trust in science and in experts, a fair distribution of risks and benefits also influence how we think about risks

These three approaches are reflected in our research in the following themes:

  1. The content and format of risk information: How can complex technical, toxicological or biological scientific information be translated into everyday language, taking into account public opinion? How should health information be presented to support informed and informed choices?
  2. Individual relevance: How can we help people make better informed and informed choices about health and safety?
  3. Social influences: What are the views and values of citizens about risks, and how can these be included in the policy? How can dialogue with the public be improved by learning from past risk communication?

In our research on informed decision-making, the first two themes are central. In our research into dealing with environmental risks the last two. By clicking on one of the research themes, you will find more detailed information about our research.

Communicatie van risico-informatie voor geïnformeerde en weloverwogen gezondheidskeuzes. In de huidige gezondheidszorg wordt van burgers verwacht dat zij actief keuzes maken over hun gezondheid en zelf de regie voeren over hun ziekte. Het is dus belangrijk om hen in staat te stellen deze keuzes te maken. Duidelijke en accurate informatie draagt bij aan weloverwogen besluitvorming waarbij rekening wordt gehouden met mensen met beperkte cognitieve capaciteiten. Meer zeggenschap van burgers over hun gezondheid, ziektes en zorg kan tevens leiden tot een meer kosteneffectieve gezondheidszorg.

Informatie GB

Het keuzeproces

Het keuzeproces kan beschreven worden in een aantal stappen. Dit is een analytische manier van beslissingen nemen. In de werkelijkheid nemen mensen vaak geen beslissing volgens deze analytische manier maar slaan stappen over of baseren zich maar op beperkte informatie. . De volgende fasen zijn te onderscheiden: (1) herkenning van het keuzeprobleem; (2) structureren van het keuzeprobleem; (3) beoordelen van alle informatie en (4) het maken van de uiteindelijke keuze. Elke fase kan meer of minder analytisch zijn en meer of minder bewust.

Mensen kiezen op verschillende manieren en gebruiken niet altijd dezelfde strategie. Voor belangrijkere beslissingen zullen mensen meer moeite doen en meer informatie zoeken dan voor een minder belangrijke keuze. Daarnaast bepaalt het doel van de keuze welke informatie relevant is. Hoe mensen kiezen hangt naast hun motivatie ook af van hun kennis en vaardigheden. De combinatie van veel of weinig vaardigheden en veel of weinig motivatie bepaalt welke ondersteuning een kiezer nodig heeft.

Gedeelde besluitvorming

Bij Gedeelde Besluitvorming of Shared Decision Making gaat het om  het persoonlijke perspectief van de patiënt en zijn of haar mening en wensen over participatie in besluitvorming. De zorgverlener heeft een rol als expert en bron van informatie en als coach voor de patiënt bij het maken van de keuze voor een behandeling.>

Bijvoorbeeld bij een keuze tussen chirurgie of radiotherapie tegen longkanker is belangrijke informatie de risico’s van opereren, de kans op genezing bij opereren versus radiotherapie, de onzekerheden hierover, de bijwerkingen van beide behandelingen. Het betreft veelal veel en complexe informatie, die voor veel patiënten moeilijk te begrijpen is. Daarbij komt dat het om emotionele beslissingen gaat waarbij mensen slechter in staat zijn de informatie rationeel af te wegen.

 

Diverse websites geven ook keuzehulpen (decision aids) om patiënten te helpen bij het afwegen van de voor- en nadelen van de verschillende keuzemogelijkheden voor behandeling.

Voorbeelden zijn de Nederlandstalige websites Kiesbeter van het Zorginstituut Nederland en Med-decs, een verzamelsite van Europese keuzehulpen of de Engelstalige website van het Onderzoeksinstituut van het Ottawa Ziekenhuis

Hieronder een link naar een keuzehulp die wij zelf samen met artsen en patiënten gemaakt hebben. Deze keuzehulp is bedoeld voor mensen met een vroeg stadium niet-kleincellige longkanker. Een vroeg stadium longkanker is over het algemeen goed te behandelen, door ofwel een operatie ofwel een gerichte bestraling, ook wel stereotactische bestraling genoemd

http://www.keuzehulp-longkanker.nl/

Hier vindt u onze onderzoeksprojecten gericht op geïnformeerde besluitvorming. Klik op een van de iconen voor meer informatie over het project.

Developing and validating a new measure for informed decision making in cancer screening: the IDMscreen Scale

RISC researchers involved in this project

Shared decision-making in integral birth care

This project aims to systematically develop and evaluate strategies to improve shared decision-making in maternity care. Strategies for clients will focus on decision support tools taking clients’ health literacy skills into account, i.e. skills to obtain, understand, apply and appraise health information to make informed decisions. Strategies for professionals will focus on skills development, following educational theories, innovative methods and existing Dutch training interventions. Strategies will be developed for decisions where more than one reasonable option exists, e.g. ‘coping with pain during labour’ and ‘issues in breast/bottle feeding’.

This project is in collaboration with:
Prof. dr. Ellen Smets, Medical Psychology, Amsterdam UMC, location AMC
Dr. Mirjam P. Fransen, Social Medicine, Amsterdam UMC, location AMC

RISC researchers involved in this project

Colorectal cancer screening

In januari 2014 is in Nederland het bevolkingsonderzoek darmkanker van start gegaan. Mensen die hiervoor worden uitgenodigd kunnen zelf beslissen of zij eraan mee willen doen of niet. In het project Darmkankerscreening onderzoeken wij hoe mensen tot hun keuze komen en welke overwegingen en factoren hierbij meespelen. Ook brengen we in kaart wat de publieke opinie is over het bevolkingsonderzoek en de mogelijke rol hiervan bij het maken van de eigen keuze.

Aan dit project werkt mee:

Dr. Ellen Uiters, RIVM

Dit onderzoek is onderdeel van het speerpunt risicocommunicatie uit het strategisch programma RIVM

Relation between cervical cancer screening and HPV vaccination

Toegankelijke communicatie over de rol van HPV-vaccinatie bij de baarmoederhalskankerscreening is essentieel voor geïnformeerde besluitvorming van meisjes en ouders voor een vaccinatie en van volwassen vrouwen voor screening. In dit project onderzoeken we in hoeverre opvattingen over de samenhang tussen vaccinatie en screening een rol spelen in de besluitvorming. We onderzoeken welke behoeften de doelgroep heeft qua informatie en hoe deze informatie het beste overgedragen kan worden. Daarbij houden wij rekening met diversiteit in etnische achtergrond en verschillen in gezondheidsvaardigheden en sociaaleconomische status.

Tijdens het onderzoek ontwikkelen we samen met de doelgroep informatiemateriaal, dat getest worden op relevantie, begrijpelijkheid en bruikbaarheid. De resultaten van het onderzoek worden gebruikt voor het formuleren van aanbevelingen aan het RIVM om de huidige informatie ten aanzien van baarmoederhalskankerscreening en HPV-vaccinatie te optimaliseren.

RISC researchers involved in this project

Cancer screenings

Preventieve gezondheidskeuzes over het wel of niet deelnemen aan borst-, baarmoederhals- en/of darmkankerscreening zijn complexe beslissingen. Bestaande gezondheidscommunicatie heeft minder kans van slagen als het geen rekening houdt met de informatiebehoefte van mensen voor het maken van een weloverwogen keuze. Het project CANEPRES (Fostering decision making concerning CAncer screening; health information NEeds and Presentation) beoogt bij te dragen aan het optimaliseren van de voorlichting verstrekt door het RIVM door de theorievorming en bestaande expertise over de behoefte aan en presentatie van informatie over kankerscreening verder uit te bouwen.

Aan dit project werkt mee:

Dr. Ellen Uiters, RIVM

Dit onderzoek is onderdeel van het speerpunt risicocommunicatie uit het strategisch programma RIVM

RISC researchers involved in this project

Lung cancer treatment

Nowadays, patients want to be involved in health decision-making. A rising number of patients wish to play a more active role and the process of shared decision making (SDM) has become more and more popular in the last decade. SDM is a process whereby patients together with their physician discuss the best evidence of the risks and benefits of all the available options and arrive at mutually agreed-on choice. Frequently, patients are accompanied by family members and these relatives are often asked to participate in the decision-making. Increasing patient participation in treatment decision-making and taking into account their preferences in this regard has been shown to increase the quality of care as well as patients’ satisfaction and quality of life. There is a discrepancy, however, between patients’ preferences regarding their participation in the process of decision making and reality. It has been repeatedly shown that patients find it difficult to participate in this decision making process. Recent published studies, with regard to cancer care, imply that physicians often underestimate their patients’ preferences to be involved in medical decision-making. Besides, oncologists often do not involve patients in the decision-making process. Therefore, it is essential to clearly discuss with patients (and family members if involved) the role they prefer in the decision-making process.
Lung cancer is the leading cancer killer worldwide and the third leading cancer in terms of incidence in both women and men in the Netherlands. Lung cancer is sub-divided in non-small cell lung cancer (NSCLC) and small cell lung cancer. The first category accounts for about 90% of all lung cancers, and has a slower progression rate than the secondary category. Presently, surgical resection of stage I NSCLC offers a reasonable possibility for cure, with five years survival rates ranging from 50% to 77%. Currently, nearly 35% of patients undergo surgical resection for stage I NSCLC. However, older patients receive curative surgery less frequently because of co-morbidities, frailty, personal choice or a perceived lack of benefit of treatment. Besides, poor pulmonary function and risk for cardiac-related mortality can limit this treatment option. A new potentially curative approach, stereotactic body radiotherapy (SBRT) was recently introduced in stage I NSCLC. SBRT delivers very high, ablative doses of radiotherapy in short treatment times of a few fractions (often three to eight) and in an outpatient setting. Image-guidance techniques ensure that the prescribed radiation dose conforms better to the tumor than was possible using the conventional radiation therapy. Local tumor control rates with SBRT range between 85% and 95% at 3 to 5 years. Even in patients aged ≥ 75 years, treatment-related toxicity is low and no significant declines in quality of life are observed after treatment. In the Netherlands, introduction of SBRT in the IKA region was associated with an increase in median survival, from 16 months to 21 months, in patients with clinically staged I NSCLC aged ≥ 75 years. Important differences were also seen in 30-day mortality between surgery (7.4%) and SBRT (1.0%). No data from the RCT of surgery versus SBRT are available at present. A recent propensity analysis in patients’ clinically staged IA/B NSCLC revealed similar rates of local recurrence and disease-specific survival in patients treated with surgery compared with SBRT. A similar matched-pair analysis of the overall survival outcomes of patients living in the province north Holland who were treated for a stage I NSCLC between 2005 and 2007, revealed that SBRT produces the same survival outcomes for elderly patients diagnosed with early-stage lung cancer as surgery.
At present, patients can choose between two curative treatment options. Patients who are suspected of having lung cancer are referred to a hospital by the general practitioner for further examination. Here, the patient undergoes evaluation by a lung physician. Once a lung cancer diagnosis or highly suspected diagnosis of lung cancer is made, the physician discusses this with the patient. Patients are confronted with the choice between SBRT and curative surgery (if possible) and a decision has to be made.
In order to help patients make these decisions, often decision aids are used. Patient decision aids are tools designed to help patients (and family members if involved) participate in decision-making about health care options and provide information on the options and help patients clarify and communicate the personal value they associate with different features of the options. In a systematic review of 23 trials evaluating decision aids for patients making cancer decisions, the authors found that, in addition to improved knowledge, realigned expectations, and values clarification participation increased with 50% in patients exposed to a decision aid. Currently, there are patient decision aids available for patients with stage III: locally advanced non-small cell lung cancer and with stage IV: advanced non-small cell lung cancer. Also, software applications on the Internet are available. A version of Adjuvant! Online: decision making tools for health care professionals, has been produced to make estimates of NSCLC patient outcomes with and without adjuvant therapy. The purpose of this program is to help health professionals and patients with early cancer discuss the risks and benefits of getting additional therapy after surgery (www.adjuvantonline.com). No patient decision aids are available for treatment decision-making (SBRT versus surgery) for stage I NSCLC. In order to design a decision aid for this decision problem, the decision-making process needs to be studied.

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The aim is twofold: 1) to study the decision-making process regarding the treatment of patients for stage I NSCLC and 2) to study the involvement of patients in this decision-making process. The data will be used to better empower patients to participate in the decision-making process. This present study will include two sub studies: (1) Interviews with patients who already made the decision about SBRT or curative surgery in the past. (2) Observations of the physician-patient interactions during consultations to gain insight into the decision-making process regarding treatment of patients with stage I NSCLC and the role of patients and physicians in this. Interviews will be held after the observations of the consultations with the treating physician and patient.

Personalised decision aid for breast cancer patients

For breast cancer patients, various additional treatments are possible after surgery. Nowadays, the choice of these additional treatments is increasingly made in consultation with the patient (shared decision making). A tool that can help with this decision making is a decision aid.

Within this project we develop a personaliaed treatment choice aid for breast cancer patients. In addition to information about the various treatments, this treatment choice aid will also estimate the chances of survival using modern algorithms. This project is a collaboration between various consortium parties: Amsterdam UMC – location VUmc, PacMed, Integraal Kankercentrum Nederland (IKNL) and PATIENT +. CZ and the Dutch Breast Cancer Association (BVN) are also involved in this project. The project is funded by Health~Holland.

The role of VUmc researchers within this consortium is to investigate how the personalized risk information can best be presented to women with breast cancer. An important aspect here is that the method of presentation must be align with both women with high and low health literacy.

RISC researchers involved in this project

Metabolic syndrome

Gezondheidsrisico’s zijn vaak lastig te begrijpen, bijvoorbeeld binnen de context van metabool syndroom, waarbij mensen nog geen/relatief weinig gezondheidsklachten ervaren. Deze mensen hebben een (mogelijk) verhoogd risico op type 2 diabetes, hart en vaatziekten en chtronische nierschade, op basis van hun leeftijd, leefstijl en/of familiegeschiedenis met deze aandoeningen.
Voor mensen met geringe gezondheidsvaardigheden (waaronder laaggeletterden)  is dit probleem nog groter. In het You’re at Risk! project werd aan de hand van de online risicocalculator van het PreventieConsult onderzocht hoe iemands persoonlijke risico op hart en vaatziekten, diabetes type II en chronische nierschade het beste gecommuniceerd kan worden.

Dit project werd gefinancierd door NWO Begrijpelijke Taal, diabetesfonds, nierstichting en de hartstichting

Een informatiefilmpje over dit project vind je hier.

 

 

RISC researchers involved in this project

Decision aid for patients with an early stage lung cancer

We study the patient involvement of the decision-making process regarding the treatment for stage I non- small cell lung cancer. At present, patients are confronted with a choice  between two curative treatment options stereotactic body radiotherapy or curative surgery.  However, there are no patient decision for treatment decision-making. The data will be used to design a decision that  empowers patients to participate in the decision-making process.

Prenatal screening

Prenatal screening is used for early detection of diseases and other complications in the fetus, for example Down syndrome. Considering the limited resources that people have (e.g. time, money and cognitive capacity) and the rapid increase of prenatal screening possibilities, it is important that parents can make an informed decision regarding prenatal screening. The purpose of the PRESIDE study is to develop a new instrument for informed decision making. This new measure can be used to test and monitor the decision for or against prenatal screening.

This research is part of the focal point risk communication of the strategic program RIVM

Read more…

RISC researchers involved in this project

Scientific information

PROMs

The aim of the PROMs study is to develop a model for the discussion of PROM data in the consultation room. PROM stands for Patient Reported Outcomes Measure. PROMs are outcomes of care that are reported by the patients themselves, such as quality of life, pain and mobility. In the study, both the perspective of patients and the perspective of caregivers are identified through qualitative research. In addition, PROMs-aggregated data in different presentation formats will be presented to a panel of patients with Parkinson’s disease, to determine how patients understand and use the information. The aim of the model is increasing patient empowerment and that patients can make better choices for a treatment, practitioner and/or hospital.

RISC researchers involved in this project

Keuzeondersteuning voor oudere patiënten met kanker

Patiënten willen steeds vaker zelf beslissen of meebeslissen met zorgverleners over hun behandeling en het ziekenhuis waar ze naartoe gaan. Om dit soort keuzes van patiënten met kanker te ondersteunen zijn keuzehulpen ontwikkeld. Door keuzehulpen in de klinische zorgpraktijk in te zetten kan er Gedeelde Besluitvorming (Shared Decision Making) plaatsvinden. Keuzehulpen zijn echter onvoldoende afgestemd op de informatieverwerking van oudere patiënten. Ouderen verwerken op een andere manier informatie en maken anders keuzes dan jongeren, onder andere vanwege veranderingen in geheugencapaciteit en werking van de hersenen. Dit project brengt systematisch in kaart brengt hoe keuzehulpen moeten worden afgestemd op behoeften en informatieverwerking van oudere patiënten met kanker.

Aan dit onderzoekt werkt mee:

Prof. dr. Julia van Weert, Communicatiewetenschappen, UvA

Dit project wordt gefinancierd door KWF

An active choice for healthy behaviour

It has been proven difficult to develop interventions that lead to compliance with a healthy lifestyle and adequate use of medication, especially regarding sustained health behaviour change. Choice architecture (like nudging) and social marketing principles are possibly a means to develop better interventions in which the broader (social) environment is explicitly involved in decisions about health. Interventions that foster active choices regarding a healthy lifestyle could bring about long-term behaviour change. This project investigates these choice architecture and social marketing methods and mechanisms within the context of physical activity, sedentary behaviour and compliance among healthy people and people with (increased risk for) chronic cardiovascular diseases.

Dit project is in cooperation with:

Dr. Evert Verhagen, Social Medicine, VUmc
Judith Jelsma, promovendus, Social Medicine, VUmc

RISC researchers involved in this project

Wetenschappelijk onderzoek levert gegevens over mogelijke risico’s uit het milieu en van nieuwe technologieën die van invloed kunnen zijn op onze gezondheid en de duurzaamheid van onze leefomgeving. Experts beoordelen de ernst van deze omgevingsrisico’s vaak op basis van aspecten die berekend kunnen worden (bijvoorbeeld de kans dat iets mis gaat). Niet-experts beoordelen omgevingsrisico’s vaak ook op basis andere aspecten. In risicocommunicatie moet hiermee rekening worden gehouden omdat deze aspecten invloed kunnen hebben op hoe mensen omgaan met de communicatie. Een aantal voorbeelden van deze aspecten:

  • Vrijwilligheid van het risico. Als mensen vrijwillig met een risico in aanraking komen (bijvoorbeeld de keuze voor bepaalde voeding) dan wordt het risico als minder ernstig beoordeeld in vergelijking tot risico’s waar  mensen niet voor gekozen hebben.
  • Controle over het risico. Risico’s waar mensen controle over hebben (zoals autorijden) worden minder ernstig beoordeeld dan risico’s waar men geen controle over heeft
  • Onmiddellijkheid van effecten. Wanneer effecten direct optreden dan worden risico’s als ernstiger beoordeeld dan wanneer effecten pas op de lange termijn optreden.
  • Maatschappelijk nut. Als men het maatschappelijk nut van bijvoorbeeld een nieuwe technologie niet ziet, dan wordt het risico als ernstiger ervaren.
  • Risico voor kinderen. Lopen kinderen risico, dan wordt het risico ernstiger beoordeeld.
  • Technologie of natuurlijk. Risico’s die door mensen worden veroorzaakt zoals van technologieën, worden vaak hoger geschat dan risico’s met een natuurlijke oorsprong.

Ook vertrouwen in instituten speelt een belangrijke rol in de risicobeoordeling van mensen. Als er weinig vertrouwen is in een organisatie of autoriteit en deze als minder competent, eerlijk en transparant beoordeelt, dan heeft dit een negatieve invloed op de risicobeoordeling. Dit is  vooral het geval als mensen zelf geen controle over het risico hebben.

Vanuit het perspectief van risicocommunicatie zijn er een aantal aangrijpingspunten om aan vertrouwen te werken:

  • Tijdig communiceren van voor het publiek relevante informatie
  • Rekening houden met de normen en waarden van mensen
  • Transparant zijn over fouten
  • Duidelijke conclusies trekken
  • Erkennen dat er onzekerheid bestaat

Daarnaast spelen ook eigenschappen van instituten en de boodschapper een belangrijke invloed op het vertrouwen. Zo heeft het algemeen publiek over het algemeen veel vertrouwen in medici en weinig vertrouwen in de chemische industrie. Een te technisch verhaal kan een negatief effect hebben op het vertrouwen van de boodschapper en de boodschap.

Hier vindt u onze onderzoeksprojecten gericht op omgaan met omgevingsrisico’s. Klik op een van de iconen voor meer informatie over het project.

Uncertain risks

When scientific knowledge cannot give a definitive anwser about the existence of risk we talk about ‘uncertain risks’. Information about uncertainties increasingly shapes public debates about risks. Because different societal groups (e.g. scientists, policy makers and the geberal public) may focus on different aspects of risk and uncertainty the odss of miscommunication is large. With the aim to improve risk communication in case of uncertain risks we conduct research into how different societal groups assess these ‘uncertain risks’ and what risk communication strategies can best be applied to promote informed decision making in case of uncertain risks.

This research is in cooperation with:

Dr. Irene van Kamp, RIVM

This research is part of the focal point risk communication of the strategic program RIVM (website in Dutch).

Risk communication during public health crises

Communiceren over risico’s is in veel situaties een complexe opgave, maar zeker in periodes gekenmerkt door hoge urgentie en hoge onzekerheid. In dit project onderzoeken we hoe- en wat we het beste kunnen communiceren tijdens gezondheidscrises. Dit met het doel mensen goed en tijdig te informeren over risico’s. Wij kijken daarbij naar situaties met infectieziekten en situaties met gevaarlijke stoffen die ofwel door experts worden aangeduid als een zeer urgente dreiging voor de volksgezondheid ofwel in de maatschappij worden gepercipieerd als zodanig.

Aan dit project werken mee:

Dr. Aura Timen, RIVM
Margreet te Wierik MD, RIVM
Dr. Marcel Mennen, RIVM

 

Dit onderzoek is onderdeel van het speerpunt risicocommunicatie uit het strategisch programma RIVM

RISC researchers involved in this project

Risks from Intensive Livestock Farming

Talk in Action! Towards a constructive dialogue between stakeholders on intensive livestock farming

The Talk in Action project focuses on conducting a dialogue regarding intensive livestock farming. Intensive livestock farming is a controversial subject in the Netherlands, specifically concerning human health. Regularly meetings are taking place between different stakeholders, such as local residents, farmers, government officials and scientific experts, and these are not uncomplicated conversations. The different risk perceptions, interests, values and concerns of the various stakeholders involved lead to tensions and impede a constructive dialogue. In our research, we attempt to uncover these different risk perceptions, interests, values and concerns. Based on these insights, in collaboration with the Municipal Health Services (GGD) and the National Institute for Public Health and Environment (RIVM), dialogue training will be developed, directed to professionals. The training will contribute to improving professionals’ skills in communicating effectively with stakeholders.

This research is carried out in cooperation with:

Professor Hedwig te Molder, Professor Language and Communication, VU University Amsterdam
Lotte van Burgsteden, PhD student, Language and Communication, VU University Amsterdam

This project is funded by ZonMw.

RISC researchers involved in this project

Imperceptible work-related risks

Employees in industrial companies are often involved with different types of work-related risks. In this project, the focus is on imperceptible occupational exposure risks. This includes physical agents, such as electromagnetic fields, chemical agents, such as toxic substances, and biological agents, such as bacteria. It is being investigated in which way these risks should be communicated towards employees, so that they understand the risks of their work situations, but also to persuade them into taking the necessary precautions to limit these risks.

RISC researchers involved in this project

Health effects high-voltage powerlines

In the near future new power lines and mobile phone base stations are being built in several parts of the Netherlands, because of the increased demands for energy and wireless communication. Despite or due to the lack of evidence, people remain uncertain and concerned about the health risks of electromagnetic fields emitted by this equipment. These concerns may be expressed in protests against the placement of new EMF equipment and some people living in the vicinity of existing EMF equipment report physical complaints they attribute to EMF in their neighbourhood. This project intends to reveal how individual, social, political and environmental factors may produce such an outcome of factors by means of a prospective cohort study.

Health effects cell towers

The number of antennas for mobile communication has increased in the last 15 years because of an increase in mobile phone use. As a consequence, exposure to radiofrequency electromagnetic fields (RF-EMF) has increased as well. For my study project we follow the AMIGO cohort to study the potential effects of modeled and perceived exposure on the development of health complaints.

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RISC researchers involved in this project

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Partners

  • RIVM

    Rijksinstituut voor Volksgezondheid en Milieu

  • GGD

    Gemeentelijke Gezondheidsdienst

  • KWF

    KWF Kankerbestrijding

  • Diabates Fonds

    Diabates Fonds