Table 4

Examples of patients’ ideas to change the health system (984 ideas)*

Area for improvementExample of ideas
Break health rules to smooth patients' journey in the care system (n=65)Change the legal limit between two refills
‘Going on vacation for more than a month can sometimes become a challenge. Pharmacies will refuse to fill prescriptions in advance. Storing even a little amount of medicine is perceived in a very pejorative way. However, it’s these things that give patients independence. You have tap water in your house; not a delivery guy who brings you exactly 1.5 L per day, regardless if it's hot or cold.’ (Male with diabetes)
Transform rules related to medications (n=58)Homogenise the number of pills per drug box
‘Why do some medication boxes contain 28 pills when months are 30 or 31 days long? We regularly find ourselves negotiating an additional box with the pharmacist. This puts the patient in an uncomfortable position.’ (Female with depression and endometriosis)
Decrease the administrative burden for patients (n=179)Simplify administrative tasks
‘I wish I had access to thermal care. I know it's possible. But there are so many procedures… And you have to ask the doctor who sometimes laughs at the request, finds it secondary or refuses it. Because of the fear of rejection and the time and energy it would take, I systematically abandon the idea.’ (Female with ankylosing spondylitis)
Facilitate the access to adequate care (n=155)Create a repertoire of care professionals specialised in specific diseases
‘Create repertoires of physicians and specialized caregivers who are used to the disease, especially in remote areas far from major care centers.’ (Female with Marfan syndrome and endometriosis)
Facilitate the access to home support (n=48)Facilitate home support (housework, grocery shopping,and so on)
‘I would not forget to ask the patient his financial and family situation so as to set up home support for those with little income. The illness treated should not be worsened by miserable living conditions.’ (Female with psoriatic arthritis and Hashimoto’s thyroiditis)
Make care more affordable (n=166)Increase the number of health interventions covered by the national health insurance
‘The cost of psychiatric care. I cannot access most of interventions and protocols that would allow me to improve my quality of life because of they are not reimbursed.’ (Male with HIV infection, a bipolar disorder and a personality disorder)
Promote the professional integration of sick people (n=90)Adapt work conditions for sick people
‘Increased recognition of the impact of the illness on patients’ ability to work. Adaptation of workplaces with for example: more isolated offices to facilitate concentration; remote work; reduction of working time; additional salary from social security.’ (Female with Hashimoto’s thyroiditis)
Transform the training of care professionals (n=129)Train care professionals for better interpersonal skills
‘I will provide medical students training in psychology and human relationships. A patient is not just an analysis report!’ (Female with chronic fatigue syndrome)
Improve treatment guidelines (n=11)Involve patients in the elaboration of care guidelines
‘Clinical practice guidelines elaborated by a group not composed at 90% by surgeons. Guidelines should take into account studies and research that include testimonials by patients who experienced the different treatments.’ (Female with endometriosis)
Reduce stigma (n=83)Improve the general public view on conditions or treatments
‘Communication about a patient's ‘real’ daily life instead of American TV shows and movies which depict schizophrenic patients as dangerous psychopaths.’ (Male with schizophrenia)
  • *All texts were translated from French to English.