Table 3

Examples of patients’ ideas to change hospitals/clinics (928 ideas)*

Area for improvementExample of ideas
Smooth patients' journey in the care system
Simplify appointment scheduling processes
‘Physicians' agendas should account that some follow-ups are annual. You shouldn’t need to call to make an appointment (6 months before!). It's a bit of a headache because you must not forget it 6 months before.’ (Female with diabetes)
Group consultations and exams in same places at same times
‘Group consultations in the same place where all specialists could discuss with each other and compare their views and diagnoses instead of criticizing and belittling those of their colleagues.’ (Female with diabetes and obesity)
Improve coordination and collaboration in care
Improve the coordination between care professionals
‘It would be a big step if all actors involved in healthcare could talk to each other! Currently doctors no longer communicate with each other—except in exceptional cases—. Rather, the patient must act as a messenger. As a result, when doctors do not agree with each other, the patient finds himself caught in the middle…’ (Female with chronic fatigue syndrome)
Avoid contradictions in the care team
‘I was prescribed some exams to do in ophthalmology by the internal medicine specialist. So I took an appointment with the ophthalmologist and waited for 6 months. All that to have him telling me that the exam in question is useless and to get a prescription for artificial tears… When I get to see my internal medicine specialist 6 months later, I get lectured because I didn't get the right exam!!!’ (Female with multiple sclerosis)
Improve the interaction between patients and the care team (n=66)Identify a point-of-contact person for exchanges between patients and the care team
‘The ‘height of cool’ would be to have an identified contact person (a nurse for example) who could be contacted at any time to answer our questions without waiting the 6 months before the next doctor visit! For example, we could contact her by e-mail and either the nurse can answer, or she asks the practitioner who gives an opinion. I'm not talking about remote consultation but more about advices on a drug and its adverse effects for example…’ (Female with Gougerot-Sjögren disease)
Develop systems for patient–physician communication outside of consultations
‘To be able to communicate by e-mail with doctors rather than having to go through an overloaded receptionist who transmits the information 1 out of 2 times in each direction.’ (Male with depression and peripheral neuropathy)
Increase patients' knowledge of their own health (n=82)Help patients to benefit from the experience from others
‘If I had a magic wand, I'd like to see more patients groups with physicians. They could exchange on their chronic diseases, de-dramatize them and ‘tame’ them. Older patients could help those who have just discovered their chronic disease. Doctors could present new studies and how patients are managed in other countries. This could help answering the distressing questions of new chronic patients.’ (Female with Hashimoto’s thyroiditis)
Facilitate the understanding of test results
‘I would like to see (through a graph?) the influence of my treatment on my cholesterol dosage. Thus, I can see what efforts pay and optimize my treatment.’ (Female with a history of myocardial infarction)
Increase time and attention devoted to patients (n=52)Propose longer consultations
‘Have REAL appointments. That mean at least 20 min—and not 5—to be able to ask questions about the evolution of my disease and the different therapeutic approaches.’ (Female with asthma and low back pain)
Improve the number and attitude of non-medical personnel (n=34)Improve the attitude of non-medical personnel
‘During tests and exams, operators should not forget that we are sick, anxious and that, although these examinations are essential, it is preferable to have a kind and benevolent attitude. We are not responsible for technical problems with equipment or difficulties between departments. We did not choose to be sick!’ (Female with breast cancer)
Improve structures and equipment (n=26)Improve the architecture and design of care facilities
‘Improve signs and directions in hospitals. Last week on the way to an effort testing, I found myself in front of the morgue… and then in the Emergency Room… I spent 15 min, lost, and running in circles in the basement!!!!’ (Female with lupus and depression)
  • *All texts were translated from French to English.