How to smart get quality of health information for general public?
From the 1990s, the excess of health information available on the Internet worried. The concern relates in particular to the quality of smart health information, its impact on patients, and more generally on the patient-doctor relationship that we imagine upset by this new interface.
The Internet has now become a major player in health information and communication
The first investigations in the United States in the late 1990s focused on the use of the Internet in retrieving health information. At that time, almost half of Americans with an Internet connection had already researched health issues. But the Internet as a medium suffered at the time from a lack of credibility and readability. The main barriers identified in the early 2000s were information overload, lack of visible structure, difficult research, lack of intuitiveness. There were more than 70,000 sites providing health information, which was heterogeneous in terms of both content and quality. The main purpose of the practice at the time was to obtain information about a disease for consultation with a doctor. The amount of information has not stopped growing exponentially, but, in recent years, it has gained in ergonomics: it has become more intuitive, interactive, dynamic, multilingual. In short, she adapted to the user in a silent manner making the experience as smooth as possible.
Some see in the “Net” a new culture with its own language. This language then follows the growing computerization of our societies involving new relationships, both between human and machine as between humans.
Internet practices for smart health information
Health information on the Internet relies heavily on individual initiative such as blogs, personal websites and on the creation of shared spaces such as forums and discussion lists. These new sources of information have upset the classic pattern of information dissemination and production. This decentralized scheme has allowed the birth of new players in this sector, but also new expectations and practices on the part of Internet users. Their perception of information available on the Internet is indicative of an ongoing dynamic. Internet users are much more wary of the data available on the Internet than before. This critical look contributes to the new patient figure.
The availability of medical information in large quantities on the Internet is the result of a bottom-up dynamic which has been made possible by the introduction of digital technologies and infrastructures.
The Internet also provides the opportunity to bring together geographically dispersed people, thus providing very significant growth potential for building communities. The anonymity made possible by these new forms of communication, community sites, offers greater freedom of expression. This virtuous circle of information exchange and enrichment promotes the appropriation of this information as well as the improvement of its quality.
Health community sites
Among the most visible sources of health information, community sites hold a privileged place. They have been the engines of an Internet of debate and exchange and have enabled “the collective appropriation of medical information and the creation of a new form of expertise”.
. Analysis of the functioning of these spaces shows that speaking is not automatic, ¾ of messages being often posted by a small number of Internet users in relation to site traffic.
Initially, the forums were led by the patients themselves, as a form of spontaneous self-regulation and grouping. New forms have now appeared, more hybrid, bringing together researchers, pharmaceutical companies and other actors who can participate in the collective production of information. A distinction must be made, however, between the construction of the content of the forum (by patients only) and the economic model of these communities pushing them to develop their data (ie to sell it) to industrialists or research laboratories, allowing their exploitation. PatientLikeme is an example.
PatientLikeMe brings together patients with different chronic diseases, rare diseases. This community space today brings together more than 300,000 members who share their experiences. Founded in 2004 in the United States by three MIT engineers, PatientLikeMe is distinguished by the sharing of health data such as age, sex, general health, but also the treatments prescribed and the effects observed. The database thus created allows for example to assess the relevance of a treatment or its side effects. It can then be described as an alternative to expensive clinical trials carried out after the marketing of a drug. PatientLikeMe is now a partner company of pharmaceutical laboratories and research centers and its turnover is partly achieved by the resale of the data collected.
Often denounced by health professionals, the quality of information is a crucial issue for the viability of these sites. Most studies agree on the heterogeneity of information available to Internet users, “university sites, pharmaceutical companies, government or even personal websites. The content is heterogeneous, true or false, intentionally or not. ” The quality is very variable from one site to another without the user being necessarily able to identify these variations. As an example, we can cite studies carried out on information intended for pregnant women, mental health, etc. all of which concluded that there was a need for visibility of data sources.
While peer review can ensure adequate quality of information, more comprehensive initiatives are underway to improve the transparency and quality of information available on the Internet. This is the example of the Health On the Net Foundation and its HONcode.
Social media and participatory medicine
Not unrelated to previous approaches, the sharing of information for the general public has led to the emergence of a so-called participatory medicine. Also called “medicine 2.0” 7, this medicine refers to a set of practices for sharing information and experiences, between professionals, between patients, between professionals and patients, via Internet access guaranteed by a computer or any other device. which connected device (smartphones, tablets, etc.). It draws on the various existing social media (blogs, social networks, community sites, Facebook pages, etc.), thus benefiting from this ability to freely create aggregated coalitions of individuals who share the same goal. The aims pursued by these sharing of experiences are diverse.
• Assessment of the quality of clinical care
As patients and their families represent a powerful source of “signals” about quality of care, each person’s experience can help to qualitatively assess health care facilities or practitioners. Social media can thus be used to tap into this information, widely disseminate it on the web, and offer analyzes or translations.
• Help in emergency situations
Social media is also a source for disseminating information in the event of an emergency, and a device for monitoring events that are taking place. The first-hand data delivered by citizens located in disaster areas (often enriched with video, audio and GPS location data) prove to be particularly informative in these situations. Sites such as Facebook can help set up emergency communication stunts, or communicate about the location of emergency rooms and wait times for citizens. Twitter, for example, was widely used by US government agencies during the 2010 oil spill following the explosion of the Deepwater Horizon platform, and was also an important source of information in 2011 after the disaster. Fukushima.
• Health promotion
Social media has the potential to reach a larger, more diverse audience, and thereby encourage more people to engage in health promotion messages. Online communities can also help establish behavior change, as in the case of smoking cessation.
• Disease management and peer support
Social media can directly support disease management by creating online spaces where patients can interact with clinicians, and share experiences with other patients. Some of these spaces go as far as integrating personal medical records, offering reservation services, and social forums where consumers can ask questions and share their experiences.
The assumption underlying these approaches is that our lifestyle remains largely influenced by the individuals with whom we establish social ties. Social networks allow in this context to develop new relationships and certain interactions. This is particularly the case with “matched health buddies”, which represent peer teaching of good practices, treatments, and better knowledge of the disease (for example, obese children refer other children with eating disorders).
Network therapies are also particularly used to help people manage alcohol addiction. Social network members in this case provide the individual with the necessary social and moral support. Cancer patients also use Twitter to discuss treatments and provide psychological support. In most cases, the use of social media seems to be correlated with lower levels of stress and depression. The table below shows the types of health issues addressed by social media.
Social networks also serve as a substitute network when the needs of individuals are not met by the responses provided by the health practitioner. Symptoms that can be mild but anxiety-provoking, or life-related discomforts related to the disease can be reasons that induce individuals to consult and participate in community networks of patients.
• Participatory medicine for epidemiological purposes
By taking an interest in the exchanges posted on Twitter by sick users, the Twitter developers have also created an application called GermTracker. Its “algorithm is capable of mapping in space and time the places where diseases are most active. They were thus able to identify over a month in New York the different places visited by individuals sick with influenza. From the analysis of keywords and geolocation data from the GPS data contained in the tweets, the application uses a color code ranging from green to red, making it possible to classify an individual according to his state of health, and places people on a map that everyone can see ”.
Social media is therefore a place for exchanging information with multiple objectives. Whatever the nature of these objectives, they have in common the production of collective knowledge which can lead in some cases to collective production.