Carenity carries your voice
Scientific committee

Improving treatment compliance for people affected by a chronic condition

Being affected by a chronic condition often means having to regularly take treatments. And even though it becomes a daily habit, forgetting to take medication is still a common problem and can have a significant impact on the treatment’s effectiveness, the intensity of symptoms, as well as on possible complications. To evaluate patients’ level of adherence, Carenity conducted a study among its members affected by various chronic conditions. Among the participants of the study, there were:

• 1,213 diabetics
• 371 people affected by Multiple Sclerosis
• and 215 patients with Rheumatoid Arthritis

Another study on treatment adherence was carried out in 5 European countries: France, the United Kingdom, Germany, Italy and Spain.

According to the findings, adherence is better when the patient accepts the treatment. The results were presented at the Ispor (International Society for Pharmacoeconomics and Outcomes Research) Congress in Vienna in November, 2016.

Improving care for people affected with mental disorders

While a person affected by a chronic condition is often a victim of discrimination, a patient with a mental disorder is also a victim of stigma. Six hundred people affected by a mood disorder took our survey and spoke about their difficulties with medical care, especially in regards to communication with their psychiatrist. Their expectations were discussed at the 9th French Congress for Psychiatry in Montpellier in 2017. Among the issues discussed at the congress were: a need for a better public awareness of mental disorders, the involvement of patient associations and the role of those close to patients and of various healthcare stakeholders, etc.

Reducing diagnostic delay in acromegaly

Time between the onset of the first symptoms and the diagnosis of acromegaly, as well as of many other rare conditions, is still too long. Twenty patients who participated in our study on healthcare for acromegaly, agree with this statement. Thanks to them, several areas for improvement were discussed at the 33rd Congress of the French Endocrinology Society. The most highlighted issues were lack of information about the condition and the lack of patients’ stories.

Evaluating patients’ difficulties and expectations

When talking about clinical trials, patients sometimes feel reluctant. And yet, every patient is willing to be involved in their own healthcare and would like to help medical research advance. What do they expect from a clinical trial and what holds them back? More than two thousand patients answered these questions in a Carenity survey. While the quality of information on a clinical trial is undoubtedly essential, other factors for non-participation were discovered thanks to this study: geographic location of the investigating site and its distance from the patient’s home.

The impact of IBS on patients’ daily life

Pain, fatigue, loss of appetite, weight loss, digestive disorders… Chronic inflammatory bowel diseases, such as Crohn’s disease and ulcerative colitis interfere strongly with patients’ everyday life. The majority of two hundred people who answered our survey also raised the issue of diagnostic delay (time between the onset of the first symptoms and the diagnosis) of which they were victims. Patients’ daily difficulties were discussed during the French Days of Hepato-gastroenterology and Digestive Oncology (JFHOD) in March, 2018.

Collaborative approach to defining new health values

Numerous ideas and concepts join in the redefinition of the healthcare system, which patients and healthcare stakeholders would like to be more humane. More than seven hundred European Carenity members were asked to define “Patient centricity” and healthcare values that seemed important to them. The results were published in the British Medical Journal in March, 2017. “Patient centricity” was defined by placing the patient at the center of the open, long-term commitment, with due respect and compassion, and with the aim to provide patients and their caregivers with the best possible healthcare.