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Over the last few decades, patients have increasingly been searching for health information on the Internet. This aspect of information seeking is really important, especially for people affected by chronic pathologies and require lifelong treatment and management. These people are usually very well informed about the disease, but are nonetheless vulnerable to hopes of being cured or saved, often amplified by misinformation, myths, legends, and therapies that are not always scientifically proven. Many studies suggest that some individuals prefer to rely on the Internet as their main source of information, often hindering the patient-doctor relationship. This is why a professional approach is imperative in this posttruth age, in order to maintain confidentiality, honesty, and trust in the medical profession.
Many patients with multiple sclerosis (MS) have expressed a need for more information and support [
A group of neurologists, psychologists, anthropologists, science journalists, and legal authorities met in Naples, Italy, in November 2016 during the
Entering a few keywords into a search engine returns a huge number of hits; however, it is critical that patients and caregivers be able to recognize information that is potentially incorrect or only partially correct. The ranking that a search engine assigns to search results is determined by algorithms inherent to the program and may be based on the number of site interactions or the number of times that a site is linked or referenced. Thus, the choice of a Web search engine also influences the retrieved results [
Internet users should know that there are people or groups interested in spreading information that is not based on scientific evidence. Users should also be able to recognize links to sponsored content. Moreover, they should understand that queries made through a search engine are not as “independent” as they might think: results are influenced by stored information about previous searches performed on the computer. Authoritative information sources are preferred, such as scientific foundations and national and international scientific societies.
An early assessment of the quality of online medical information conducted in 1997 on pediatric fever revealed that only one in 10 websites provided complete and completely accurate information [
Meanwhile, several organizations provide website logos, badges, or “seals of approval” to be displayed only on websites that meet specific criteria [
In addition, the HON website provides an Internet search portal—HON Search—through which it is possible to focus search results on medical information that meets quality criteria. This can significantly improve search effectiveness by excluding advertisements and nonrelated websites from the search results. Results can be further filtered for interest to patients and caregivers or to medical professionals. Such guidance may help information seekers avoid some of the pitfalls of searches.
Another important initiative in this area is the DISCERN Project, which is based at the University of Oxford, Division of Public Health and Primary Health Care, Institute of Health Sciences [
We have summarized the minimal requirements of a medical/scientific website into the following schema (see
We also suggest that the patient or caregiver be informed about the existence of HON and the DISCERN initiatives and be encouraged to use these services.
1. Authority: indicate the qualification of the authors.
2. Complementarity: information should support, not replace, the doctor-patient relationship.
3. Confidentiality: respect the privacy and confidentiality of personal data submitted to the site by the visitor.
4. Attribution: cite the source(s) of published information, date, and medical and health pages.
5. Justification: site must back up claims relating to benefits and performance.
6. Professionalism: accessible presentation and accurate email contact.
7. Transparency of financing: identify funding resources.
8. Advertising: clearly distinguish advertising from editorial content.
A good-quality publication about treatment choices will do the following:
Have explicit aims
Achieve its aims
Be relevant to consumers
Make sources of information explicit
Make date of information explicit
Be balanced and unbiased
List additional sources of information
Refer to areas of uncertainty
Describe how treatment works
Describe the benefits of treatment
Describe the risks of treatment
Describe what would happen without treatment
Describe the effects of treatment choices on overall quality of life
Make it clear there may be more than one possible treatment choice
Provide support for shared decision-making
A medical/scientific website must do the following:
Use the correct vocabulary, be clear, and be easily understandable
Clearly identify its managers and sponsors
Have an editorial board responsible for scientific content
Provide bibliographic support for all news published so that personal opinion—even from an expert—is clearly discernible from peer-reviewed scientific literature
Clearly distinguish sponsored content
Indicate when its content was last updated so the visitor knows if it is outdated
Clearly state their privacy policy
An online community or support group allows exchange of experiences and information among group members that may be helpful to patients and caregivers [
We have collected some of the features found in online communities that can be instrumental for meeting the need for support and interaction that a person living with MS may be experiencing:
Public profiles. Communities with open profiles that are visible to everyone help users to find each other easily and to share personal information and experiences related to MS.
Messages. Communities that allow exchange of different types of messages meet the diverse needs of people with MS:
Connections among individual users (ie, chat)
Messages among established contacts (ie, contact lists, friend requests, and private messages)
Peer counseling (ie, people with MS who volunteer their time to help others with MS)
Forum. These are forms of asynchronous interaction and communication that must be moderated to prevent abuses; moderation also serves to avoid the spread of incorrect information. Patients should be encouraged to frequent forums that are moderated by health care professionals.
The following are suggestions for critical reading of content and participation in online discussions in a community, blog, or forum:
The community website must have clear rules of conduct. Each member must carefully read and follow the rules of the community, blog, or forum. To protect the interests of the community members, administrators must deny access to users with interests different from those of the group (ie, spam, advertising, misinformation, or irrelevant information). The presence of moderators in a community should ensure that all members follow the rules. Channels should exist for reporting inappropriate behavior.
Privacy must be protected. Members of the community, blog, or forum should have the option to remain anonymous or share only the personal information they deem appropriate; it is important to remind patients that many threads and posts are open.
The website must share only validated content. Confirm that the content is supported by bibliographic references to scientific evidence that was produced under expert supervision and that the content is updated regularly.
Comments and posts by individuals can provide useful impetus, but it is important that users realize that the personal experiences of others may not apply to their specific situations. They must be able to confirm the information with authoritative sources and discuss it with their physician. Information about MS treatment discussed online may refer to solutions that have not been approved by the regulatory agencies in a patient’s homeland. Patients and caregivers should be encouraged to consult the website of the national MS organization for official information on drugs approved for MS in their country. In addition, they should ask their physician when questions arise. Moreover, it is important to stress at the outset that the relationship between the patient and the clinician is essential for all aspects of diagnosis and clinical management. Online support groups are not a substitute for direct interaction with the clinician. A survey of 8586 patients with MS revealed that, whereas the first source of information for most patients is the Internet, the vast majority of patients with MS still consider their physician to be the most trusted source for medical information [
Health On the Net
multiple sclerosis
Social Media and Multiple Sclerosis
The authors would like to thank Richard Vernell, biologist and consultant for an external support organization, for data collection.
None declared.