In Digitalwell Arena there is a pronounced focus on contributing to digital innovation that creates better health for everyone. But digitization also risks excluding groups. - It is easy to believe that equality in healthcare means that everyone should be treated the same, says Tara Mehrabi, senior lecturer in gender studies.
In Digitalwell Arenas, in parallel with the transformation to a more digital health society, there is also a mission to contribute to the goals for sustainable development in Agenda 2030. Equality and reduced inequality are two of these goals. Initially, the researchers have Center for Gender Research at Karlstad University worked on mapping what research has been done in the past about health linked to gender, sex, ethnicity and sexuality.
Now one starts pilot study which focuses on the challenges three often overlooked user groups may face in the digitization of healthcare: Immigrant women, transgender people and working-class men. The aim of the study is to create insights that make it possible to develop digital solutions that are more inclusive – regardless of a person's gender identity, class affiliation or ethnic identification.
Cherish the personal story
Together with research colleague Sebastian Mohr, Tara Mehrabi is responsible for the study. She thinks there are several challenges to think about connected to digitalisation.
- There is a risk that people will be reduced to numbers if we place great emphasis on technological and digital systems, but not as much on socio-cultural context, personal experiences and needs. There is also the risk of missing important information related to health, individual needs or access to care if the personal story disappears, she says.
Tara Mehrabi emphasizes that digitization is not a neutral process that reduces the risk of discrimination. Although technology can contribute to making care more accessible, for example to people in sparsely populated areas, there is a risk that other groups are discriminated against if socio-cultural context or norms are not taken into account when new services are designed and distributed.
Risk of structural discrimination
For example, problems with discrimination and barriers in contact with the care system often recur among trans people, because there is a lack of knowledge about their bodies and care needs. It is then a matter of structural discrimination.
- A health risk involves screening for cancer. Will a transsexual man, for example, be called for an examination of the uterus after a gender confirmation treatment? It is a relevant question in a context where healthcare systems are based on social security numbers and digital platforms that are gender-coded. Then groups are called based on binary information, which says whether you are female or male, says Tara Mherabi.
In the same way, there are also general risks linked to an expanded digital health care, believes Tara Mehrabi:
- Digital solutions should benefit everyone and increase the opportunity to take control of one's own health, this requires technical skills and a positive attitude towards technology. But there are studies that have shown that many who seek care experience digital health services as complicated, so they refrain from using them. Age is a factor that differentiates groups, and if you look at ethnicity, it's not just about language. Gender is also a distinguishing factor, as boys are more socially trained to be interested in technology.
Tara Mehrabi also discusses Swedish studies on digital care systems that show that ethnicity, gender and language play a decisive role in the users' experience of care. The studies also show that many therefore refrain from seeking help, due to the fact that they experience obstacles or discrimination linked to language barriers and cultural differences in the view of health.
Equality - not the same for all
And even when larger groups adopt technology, there are pitfalls, for example not taking individual conditions into account.
- Apps such as pedometers and calorie counters can help many to a healthier lifestyle, but it is also easy for people to become fixated on measurement results that are general and do not suit all individuals. It can, for example, increase the risk of eating disorders, says Tara Mehrabi.
"Transforming healthcare is not a one-time event, which you solve with a study, but it requires constant interaction."
Taking into account people's differences, the socio-cultural context and norms about bodies, health and illness is an important aspect for understanding the concept of equality in healthcare, believes Tara Mehrabi.
- It is easy to believe that equality in care means that everyone should be treated the same. But it risks putting people who are already excluded even further away, as in the case of trans men's increased risk of certain types of cancer.
Another aspect Tara Mehrabi finds interesting is the "invisible work", a concept she borrowed from the feminist researcher Nelly Oudshoorn. Digital health solutions often hold the promise of efficiency and increased accessibility. However, even if they can help reduce the workload in care, it does not mean that they reduce the overall workload. Instead, they can transfer responsibilities and tasks from healthcare staff to patients or from doctors to nurses.
Tara Mehrabi laughs a little as the interview comes to a close, saying that she will probably be perceived as anti-tech. On the contrary, she sees great opportunities with the digital development, not least because more accessible information can increase people's awareness and give greater opportunities to take control of their own health.
What are your hopes for Digitalwell Arena?
- That we can create a system that can also handle criticism and use it to improve the system. Transforming healthcare is not a one-time event that can be solved with a study, but requires constant interaction. And I hope that we don't exaggerate the expectations that everyone can fend for themselves, but that we also have room for vulnerability and think it's okay, says Tara Mehrabi.
