Chronic disease: what does the Internet really change in patients’ lives?

For the first time, a study has assessed the impact of digital technology on the lives of patients with chronic diseases. It was conducted by the ICA patient association collective, in partnership with researchers from the Smart Objects and Social Networks chair at Institut Mines-Télécom Business School. The study provides a portrait of the benefits and limitations perceived by chronically ill people for three technologies: the Internet, mobile applications and smart objects. Multiple factors were evaluated, such as the quality of the relationship with the physician, the degree of expertise, the patient’s level of incapacitation and their quality of life.

Internet research has become an automatic reflex to learn about any disease. From the common cold to the rarest diseases, patients find information about their cases through more or less specialized sites. Scientific publications have already shown that social networks and health forums are especially used by patients when they are diagnosed. However, the true usefulness of the Internet, apps or smart objects for patients remains unclear. To gain a better understanding of how new technology helps patients, the Impatients, Chroniques & Associés collective (ICA) contacted the Smart Objects and Social Networks Chair at Institut Mines-Télécom Business School. The study, conducted between February and July 2018, focused on people living with chronic disease and their use of digital technology. The results were presented on February 20, 2019 at the Cité des Sciences et de l’Industrie in Paris.

More than 1,013 patients completed the questionnaire designed by the researchers. The data collected on technology usage shows that, overall, patients are not very attracted by smart objects. 71.8% of respondents reported that they used the Internet only, 1 to 3 times a month. 19.3% said they used both the Internet and mobile applications on a weekly basis. Only 8.9% use smart objects in addition to the Internet and apps.

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The study therefore shows that uses are very different and that a certain proportion of patients are characterized by the “multi-technology” category. However, “contrary to what we might think, the third group comprising the most connected respondents is not necessarily made up of the youngest people,” indicates Christine Balagué, holder of the Smart Objects and Social Networks chair. In the 25-34 age group, the study found “almost no difference between the three technology use groups (20% of each use group is in this age group)“. The desire for digital health solutions is therefore not a generational issue.

Digital technology: a relative benefit for patients?

The specificity of the study is that it cross-references the use of digital technology (Internet, mobile applications and smart objects) with standard variables in publications that characterize patients’ behavior towards their health. This comparison revealed a new result: the patients who use technology the most are on average no more knowledgeable about their disease than patients who are not very connected. They are also no more efficient in their ability to adopt preventive behavior related to their disease.

“On the other hand, the more connected patients are, the greater their ability is to take action in the management of their disease,” says Christine Balagué. Patients in the most connected category believe they are better able to make preventive decisions and to reassure themselves about their condition. However, technology has little impact on the patient-doctor relationship. “The benefit is relative: there is a difference between the benefit perceived by the patient and the reality of what digital tools provide,” concludes Christine Balagué.

Some of the criteria measured by the researchers nevertheless show a correlation with the degree of use of technology and the use of several technology devices. This is the case, for example, with patient empowerment. Notably, the most connected patients are also those who most frequently take the initiative to ask their doctor for information or give their opinion about treatment. These patients also report being most involved by the doctor in medical care. On this point, the study concludes that:

“The use of technology[…] does not change the self-perception of chronically ill patients, who all feel equally knowledgeable about their disease regardless of their use of digital technology. On the other hand, access to this information may subtly change their position in their interactions with the medical and nursing teams, leading to a more positive perception of their ability to play a role in decisions concerning their health.”

The flip side of the coin

Although information found on the Internet offers genuine benefits in the relationship with the medical profession, the use of technologies also has some negative effects, according to patient feedback. 45% believe that the use of digital technology has negative emotional consequences. “Patients find that the Internet reminds them of the disease on a daily basis, and that this increases stress and anxiety,” says Christine Balagué. This result may be linked to the type of use among the chronically ill. The vast majority of them generally search for stories from other people with similar pathologies, which frequently exposes them to the experiences of other patients and their relatives.

Personal stories are considered the most reliable source of information by patients, ahead of content provided by health professionals and patient associations, a fact due to the large, and unequal, amount of information available. Three quarters of respondents indicated that it is difficult to identify and choose reliable information. This sense of mistrust is underlined by other data collected by the researchers during the questionnaire: “71% believe that the Internet is likely to induce self-diagnosis errors.” In addition, a certain proportion of patients (48%) also express mistrust of the privacy of certain mobile sites and applications. This point highlights the challenge for applications and websites to improve the transparency of the use of personal data and respect for privacy, in order to gain their trust.

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The future development of dedicated web services and patient usage is an issue that researchers want to address. “We want to continue this work of collecting experiences to evaluate changes in use over time,” says Christine Balagué. The continuation of this work will also integrate other developing uses, such as telemedicine and its impact on patients’ quality of life. Finally, the researchers are also considering taking an interest in the other side: the doctors’ side. How do practitioners use digital technologies in their practice? What are the benefits in the relationship with the patient? By combining the results from patient and physician studies, the aim will be to obtain the most accurate portrait possible of patient-physician relationships and of treatment processes in the era of hyperconnectivity.