Back to work after cancer

Digital tool helps sick employee return to work

For many people, cancer is an illness that impacts deeply on their existence. The diagnosis and treatment have significant physical and mental consequences that may be temporary but also permanent in nature. Employees with cancer are often forced to stay home for prolonged periods of time. The return to the old position can sometimes be difficult because the employee and employer are unfamiliar with the new situation. The project I-KNOW-HOW offers insights into the consequences for an employee who undergoes cancer treatment and then returns to work. This is achieved by collecting and organising the experiences of former patients. Knowledge Centre EVM is a participant in this project (see frame). One of the outcomes is a digital aid that helps employees and employers make the return to work easier.

Paul Vader, editor HZ Discovery

Firstly, some figures: early diagnosis and better treatments result in an increased percentage of people surviving cancer. In 2019, around 119,000 people in the Netherlands were diagnosed with cancer, 40,000 of which (= 34%) were of working age, between 20-64 years old. Assuming a labour force of 9.3 million people, annually around 1 in 170 working people is confronted with cancer. The expectation is that this will increase further. Research shows that cancer patients are, on average, (partially) absent from work for 12 to 18 months and that after 18 months approximately one quarter is still at home.

From Diagnosis to Reintegration

There are many types of cancer, every patient is unique, and the consequences for the sick employee depend on the type of work they do. All the same, the process an employee with cancer goes through can be divided into roughly the same phases. Each phase has its own questions and challenges for both employee and employer. It starts from the moment the employee learns they have cancer. The diagnosis turns the patient’s world upside down. It is a time of fear and uncertainty, including with regard to work. Questions arise such as: when do I tell my employer and colleagues? And: how do I keep everyone informed? After the diagnosis, treatment starts, which also includes a lot of uncertainty, for example about the physical effects that may occur. For most employees with cancer, this is where at some point they have to conclude they cannot perform (all of) their work anymore. The questions that are important during this phase evolve around the uncertainty of whether the employee is able to return to their previous function. After the cancer treatment, begins the process of reintegration. Many people experience the work as a welcome change, after spending a year or longer dealing with nothing but their illness. Still, this period can be very difficult. Many employees with cancer discover that they are no longer able to do everything at the same level as before the treatment.

Action Perspectives

The process people go through might be roughly the same for each employee with cancer, the way in which they go through it is not. There also is not just one correct way for getting back to and staying in work after cancer treatment. The circumstances are different for everyone: people are each as different as their work situations. The one employee calls their boss, as a manner of speaking, from the hospital parking lot to inform the boss that they are ill, another will wait until they have more information to share.

But it is still possible to take lessons from the experiences of employees who have gone back to work after dealing with cancer. As part of the I-KNOW-HOW project, dozens of working people with cancer, HR advisors, managers, job coaches, and medical practitioners were interviewed. The different ways in which these parties deal with the same questions and challenges as part of the process offers insights and, in a way, present choices to others. These so-called action perspectives are at the basis of the digital tool that the EVM knowledge centre has developed. In the tool, different interactive narratives are processed: unique story lines from the perspectives of all the different parties. They also form an entryway towards more detailed information about cancer and work. The tool enables ill employees, managers, HR advisors, and other engaged parties such as company physicians, colleagues, care professionals, and job coaches to see their own role and that of other engaged parties, allowing them to keep better grips on the reintegration process. The researchers made a video about the project.

The EVM knowledge centre, in the interreg-2-seas project I-KNOW-HOW, is collaborating with partners from Belgium, France, and the United Kingdom. The general objective of I-KNOW-HOW is to enable people who have been diagnosed with cancer to return to work or to stay in work. To this end, new services for employers, employees, (para)medical experts, and job coaches are created in collaboration. In addition to the tool discussed in this article, a coaching service is being developed for employers and a training programme for HR professionals and managers. The objective is for these innovative services to increase the percentage of people with cancer who stay in work or return to work by 15% and to also reduce the amount of time employees are absent from work. The expectation is that these programmes will significantly decrease the costs for both employers and the government.

Research Philosophy

The I-KNOW-HOW project is a great example of the way in which the EVM lectorate conducts research. Lector Hans de Bruin: “What it is all about is social innovation and the means for that is co-creation. That is to say that we put employees, employers, and the other parties together in the co-creation sessions so that they can respond to each other and exchange advice that we then incorporate into the digital tool. That way, we use each other’s expertise to jointly decide the right thing to do. We call that process social innovation.” The participants in the sessions indicate what phases are still missing in the tool and need to be worked out and supplemented. In this way, the intervention is continuously further developed and refined. The goal of the research is to generate progress on socially relevant topics and simultaneously deepen the knowledge about social innovation. “This research is about health, and of course it is good for society that it can help many people, but from my perspective as researcher, every other social theme should also be approached in the same way.” The lectorate is collaborating on this with partners who strive for social change, such as the Solidarity University and the ZB.

The Next Step

Project I-KNOW-HOW ends in 2022. Currently, the last sessions are being held with former patients who have looked at the tool and based on that, share their experiences with the researchers. That serves to improve the tool and supplement it with new insights. The participants to the sessions are enthusiastic about what they are being shown. Most of them think that this type of information system could have helped them a lot in the confusing and emotional times they have just gone through and where they had to find out a lot of things for themselves. Or, as one participant puts it: “You feel so uncertain when this happens to you. It is good to find some handholds to deal with it.” The end of the project does not mean that the research is finished. On this point, researcher at the EVM knowledge centre, Irene Fierloos, says: “In the past project, we made a start with the development of the tool, but it is far from finished. We are now working on the application for a two-year follow-up project, during which the tool will be further refined, and it will be studied how it is being used in practice and what its effects are.”

De onderzoekers

As lector Expertise and Valorisation Management, Hans de Bruin (1960) is concerned with the question how to utilise the expertise of parties and people in such a way that together they do the right things. The challenge is how to bring people with different world views closer together. To this end he has developed the social theory of a sustainable society. EVM trains students, colleagues and professionals in systems thinking, which evolves around the three competencies of conceptual thinking, critical reflection, and connecting. These competencies are required to become the ‘change facilitator’, who shapes the sustainable society. Hans works across a wide area of subjects: environmental management, energy transition, mobility, but also questions in the area of dementia or cancer. In 1987 he graduated as a computer scientist at TU Delft and in 1995 obtained his doctorate at the Erasmus University Rotterdam. Besides his work at research universities and at the HZ, he has experience as a software engineer and consultant in the business world.

Irene Fierloos (1994) has been working as a researcher for the I-KNOW-HOW-project since April 2021. Irene studied Social Policy and Public Health in Utrecht and is finalising her PhD with the Social Healthcare department of the Erasmus MC in Rotterdam (prospective award date July 2022). For her PhD track, she is researching how social networks and informal help can be utilised to improve independence and resilience. In the current participation society, there is a huge reliance on informal support. It is important to accurately map what groups currently have insufficient access to that support and what the quantifiable consequences are for health and wellbeing. The subjects and target groups are diverse: from access to informal education support for parents of young children to determinants of loneliness among the elderly in Europe.