Deze serie wordt binnenkort ook in het Nederlands gepubliceerd.
In collaboration with students of the master Global Health and the patient expertise team of IKONE the contribution of eHealth to the quality of life for people with a chronic disease was studied. Four very insightful interviews on eHealth innovations in relation to quality of life were conducted.
In the next month we will publish short summaries of those interviews from the perspectives of the members of the patient expertise team.
1. Interview with Lotte van Lith
“For the technology to work, it also requires the structure outside the technology to normalize it [...]”
The interview with Lotte van Lith was very insightful and inspiring, really showed how much a chronic disease, like Crohn’s disease can impact your life. Crohn’s disease is an inflammatory bowel disease, which comes along with many symptoms, such as abdominal pain, diarrhea and weight loss. Lotte was first diagnosed when she was 18 years old, and the years that followed were years filled with sickness, symptoms, recovery and relapses again. Fortunately, her disease has been more or less stable she has felt quite good for the past six years .
Since she feels quite well at the moment, Lotte does not use many eHealth solutions with regards to Crohn’s disease, but during her years of sickness, the internet has been a valuable source for her, both for information and for connecting with other people with similar diseases. However, the enormous amount and variety of data provided by the internet, makes it difficult to select useful information. A bright suggestion by Lotte was therefore a meta-level of technology that selects and shows what to do with information.
The internet also played a significant role in connecting Lotte with other people similar disease, which helped her with dealing with the disease. And even though, a patient federation is already existing for Crohn’s disease, Lotte believes that more forms of connecting would be better. The importance of the emotional aspect of having a disease is generally underestimated and therefore eHealth innovations could play an important part here.
Although, Lotte’s overall view on eHealth solutions was quite positive, she was also very realistic about the use of it and acknowledged the downsides of them as well. For example, she explained how having access to all your medical data 24/7 can also lead to a lot of stress. Additionally, data is only data, so having access to all this information does not guarantee a better quality of life, it is also about what you do with the data. Lastly, Lotte mentioned that technology always exists within a society, therefore, in order for people to use technology for their diseases, taboos around talking about diseases and its symptoms should first be addres. This was illustrated by her quote:
“[...] you know for the technology to work it also requires the structure outside the technology to normalize it, it is always a feedback between the two.”
In conclusion, Lotte generally had a positive view on the use of eHealth innovations, however her view was also realistic and therefore she did acknowledge the flaws of eHealth technologies. Thus, eHealth does have the potential to improve the quality of life, but it remains only a tool.
Interview with Laura Dieleman de Bruijn
We are not always aware of the presence of technology in our daily lives!
Throughout the conversation with Laura Dieleman de Bruijn, it became very clear that pain is a permanent factor in her life. When she was only fifteen years old when she was diagnosed with gallstones. Due to the severity of her condition, doctors decided to put her in a coma to conduct surgery on her. For the next three to four months she was in a coma and a total of 40 surgeries were performed. After this hospitalization she was diagnosed with critical illness polyneuropathy (CIP). The syndromes are of diffuse, symmetric and flaccid muscle weakness. It makes people more unwell and is a major cause of long-term difficulties with movement.
When approaching the use of technologies in her life, Laura was not at first fully aware of the fact that it is a constant variable in her life. Any kind of technology turned out to be of importance to her on various levels. She is in constant use of multiple Apps that facilitate her daily life routine. Also, the use of the internet is a necessity for her work life. Features such as shock-therapies help to regenerate the nerves and to cope with pain.
Conclusionally, it is possible to say that Laura has a very positive attitude towards technologies, even though some of them have only been helpful for a short period of time throughout her disease, but not on a long lasting basis. Therefore, there are more advantages than negative features in using technology for her personally. When it comes to quality of life she repetitively expressed her interest towards a universal healthcare data as a main importance for her. The main issue lies within a more easy and all-time access for healthcare professionals.
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