Chronic illness: How is your relationship with your doctors? Carenity members share their thoughts!

754 members responded to our survey in the US, the UK, and France

We conducted a survey from February 23 to March 23, 2022 involving 754 Carenity community members in the US, the UK, and France.  

Surveyed members' profile 

The majority of members who participated in the survey are living with multiple sclerosis (14%), type 2 diabetes (8%), fibromyalgia (6%), or ankylosing spondylitis (6%). 

40% of members surveyed were diagnosed less than 5 years ago. 

The majority of Carenity members questioned have been treated by the same medical team (52%) since their diagnosis.

Why have members chosen, or not, to stay with the same medical team since diagnosis? 

48% of respondents have chosen to change their medical team since diagnosis. They cited the follow reasons why:

For the majority of participants, the reason for their change was for logistic or technical reasons: a move (55%) or their doctor's retirement (23%).

However, 25% made a change because they did not feel heard, 17% because they did not feel understood, and 14% did not trust their doctor. 

52% of Carenity members who responded to our survey are still being treated by the same medical team. The reasons are as follows: 

66% of them trust their team, feel well taken care of, and listened to. 15% have seen their health improve thanks to their medical follow-up. 

What relationship do patients have with their doctor(s)? 

The majority of patients (57%) feel comfortable asking their medical team any question they may have and 39% tell share their expectations and needs. 35% are able to be proactive in their research about their condition and openly talk to their doctors. 

However, 22% do not communicate about their fears and anxieties, 13% do not share their needs and expectations with their doctors and 8% do not dare to ask their doctors questions. 

What improvements can be made in the care provided by patients' medical teams? 

The improvements most desired by the members surveyed are: information on new medical techniques, protocols and advances (23%), greater open-mindedness on the part of doctors on possible alternatives to drug treatments (18%) and more transparent communication (15%). 

How have online patient communities helped to change the doctor-patient relationship? 

We asked Carenity members if their relationship with their doctors had changed since they started interacting on health forums such as Carenity. This was the case for only 16% of them. 

Nevertheless, some see a real benefit in the relationships they now have with their doctors. They feel that they are better informed about their condition and equipped to broach topics like the side effects of their medications, alternative treatments, etc. They share the information they discover on Carenity with their doctors and understand their condition better. 

93% think that it is important to be able to inform oneself about one's condition for the following reasons:

40% have a better understanding of the symptoms associated with their illness, 32% feel that they play a more active role in their health, and 24% can now better anticipate their symptoms.