University of Copenhagen: Living with chronic disease: Three questions that still need answering

Since 2015, the cross-disciplinary research project VITAL based at the Department of Anthropology has focussed attention on the everyday lives of people with chronic diseases.

The project has just ended (see box), but according to Professor MSO Ayo Wahlberg, who led the project, a lot still needs to be done. We are still a long way from being able to give this growing group of people as good and dignified a life as possible.

About VITAL and Chronic Living
Since 2015, an interdisciplinary group of researchers have been studying the everyday lives of people with chronic conditions under the auspices of the research project VITAL with the subtitle ’The Vitality of Disease – Quality of Life in the Making’.

The project has been based at the Department of Anthropology, led by Professor MSO Ayo Wahlberg and funded by the European Research Council. Following an international conference last spring which saw participation from nearly 500 researchers from all over the world. The project has just come to an end with a final report submitted to the European Research Council.

The number of people living with chronic conditions around the world has increased due to better treatments and longer life expectancies, leading to an increased focus on the everyday lives of patients.

“Since governments around the world have incorporated everyday life improvements as both political and therapeutic objectives within their healthcare systems, it is no longer enough to prevent and medically treat chronic diseases. What we need to do is to introduce the knowledge we have of their lived life, their everyday life, into our treatment and support of patients living with chronic conditions,” says Ayo Wahlberg.

The VITAL project has highlighted the importance of continually helping people adjust or calibrate their chronically affected lives, showing how many rely on their smartphones and digital communities like Facebook in the long periods between check-ups with doctors.

Three main challenges
According to Ayo Wahlberg, the main conclusion of the project is that other forms of expertise than those found in biomedical specialties are required if we are to help patients calibrate their everyday lives to what the VITAL team call ‘chronic living’.

This raises new questions that still need answering. Ayo Wahlberg highlights three:

Which challenges do individual patients in different patient groups and their families face in their everyday lives, often amplified by socioeconomic inequality and discrimination, and what is the best help we can provide?
How do we ensure that relevant actors work together – from health professionals in hospitals, through municipalities to general practitioners and patient associations – to develop infrastructure that ensure better and more systematic help and everyday support for people living with chronic diseases?
How should societies rethink their healthcare systems to ensure that focus is not solely on medical treatment and prevention, but also on the everyday lives of people with chronic diseases?
Essential to addressing these questions, Ayo Wahlberg argues, is getting researchers from various disciplinary backgrounds to work together, such that in depth knowledge of how people living with chronic diseases can live a good life despite the limitations they very often engender.

“In my view, from the moment of diagnosis, we should be offering patients support and advice that not only concerns their medicines and treatments – which of course are crucial – but also the ‘chronic living’ that lies ahead. This support should be soundly based on our growing knowledge of the everyday life of people living with various conditions. Chronic conditions are as much human concerns as they are biological phenomena, yet knowledge of the former is just not systematically incorporated when it comes to providing support to patients,” he says.

Focus on different diseases and social conditions
One of the challenges is to develop customised support that takes into account an individual patient’s biomedical needs alongside the social differences that can compound everyday challenges.

“Suffering from arthritis is not the same as having cancer, of course. We need more anthropological insights into the challenges faced by people with different, and at times multiple, diagnoses, e.g. lung disease, dementia, mental disorders, diabetes and heart disease, in different parts of the world,” he argues.

”The question is therefore how we build an ‘infrastructure for people with chronic diseases’ that includes dialogue, exchange of experiences and other forms of guidance – alongside biomedical treatments – as a form of intervention.”

Ayo Wahlberg
Ayo Wahlberg also believes that gathering relevant professional actors is vital to ensure that all patients with chronic conditions are offered systematised support focused on everyday aspects of living with their specific conditions.

“Simply asking doctors to undergo further education is not realistic. Doctors are busy enough as it is focusing on their area of specialisation, which is to provide and improve the treatments that sustain lives. When it comes to chronic living support, patient associations currently play a crucial role, but in many ways they are currently plugging a service gap in our healthcare systems,” Ayo Wahlberg explains.

“The question is therefore how do we build better infrastructure for people with chronic conditions that includes dialogue, exchange of experiences and other forms of guidance – alongside biomedical treatments – as a form of therapeutic intervention. Such support needs to take into account that each chronic condition comes with its unique challenges which are in turn shaped or compounded by various social factors.”

All this requires what Ayo Wahlberg refers to as a paradigm shift in healthcare to ensure that the everyday consequences of living with a chronic condition are at the very heart of both policy and practice.

“Today, the robust knowledge and insights that anthropologists have been generating for decades is structurally excluded from what should be ‘evidence based’ medical practice. And that’s simply not good enough. The big question is: how can we rethink our healthcare systems?”