Patients’ views of osteoarthritis: a different kind of understanding

Edito of 05/26/2014

Whilst osteoarthritis sufferers use social networking forums* in France to ask for advice or learn from other people’s experiences, blogs comment on the latest medical news or promote alternative treatments. As a result, people develop different ideas of the condition based on other patients’ views and what they read on blogs. It is this kind of knowledge – specific to patients – that doctors are now finding during consultations and on web-based discussion forums.

So say the results of a survey carried out on social networks (forums and blogs) during February, March and April 2014. Two platforms were used for the survey: the forum Doctissimo (threads on “osteoarthritis and bone and joint disorders”) and Talkwalker, an equivalent of Google Alerts, with the keyword “osteoarthritis”.

The most common messages in the forums suggest that people have lost their points of reference in the healthcare system (“Saw an osteopath who told me it was tendinitis”; “My GP sent me to a rheumatologist who said it was osteoarthritis of the knee”). “In a fix” or “at a low point”, patients turn to their peers for advice or to hear from someone who has been through the same experience (“Is my case exceptional or is it often like this?”). Requests for advice and other people’s experiences of this kind prompt responses in which osteoarthritis is seen and analysed through a specific filter, namely the patient’s.

Three-quarters of new threads started in the forums are requests for advice. osteoarthritis of the knee is a favourite theme (stabbing pain in both knees after a long walk, a failed corticosteroid injection, severely damaged cartilage in the knee and the prospect of a graft, etc.). After osteoarthritis of the knee, the most common requests for advice are on hip replacements and osteoarthritis of the spine.
Individual stories are divided between people looking for similar cases to their own (“Anyone had a gel injection in their knee?”; “How do you cope with severe osteoarthritis of the neck?”) and spontaneous postings (for example, on the benefits of a special diet for osteoarthritis).

  • Blogs that post about osteoarthritis tend to comment on the latest medical news. In April 2014, the article published in osteoarthritis Care & Research and pithily summed up as “Osteoarthritis of the knee: drink milk” did the rounds of the French blogosphere. Blogs on osteoarthritis also offer therapeutic advice. It can be difficult to distinguish between advice based on conviction (for example, the blog La Médecine Naturelle de Suzanne) and what is promotion or advertising (such as Pharma5avenue).
  • It is in the forums that patients best express their “personal expertise” in osteoarthritis, which they claim is quite different from a doctor’s knowledge and expertise, though complementary to it. Both kinds of expertise need to understand each other. The quality of the doctor-patient relationship and of the new web communications platforms are the keys to this experience.

Arthrolink Editorial Committee