Table 2

Examples of patients’ ideas to change consultations (1701 ideas)*

Area for improvementExample of ideas
Create the context for real discussions with patients
Kind and humanistic care
‘Learn to announce a diagnosis. Learn to listen. Learn how to enter in a hospital room (…) Learn how to introduce yourself when you're an intern and leave your ego aside. Stop telling patients ‘the doctor (or intern) will come to see you this morning’ (…) In short, I would like not to have the impression to be at the orders of very busy people who hardly spend more than 30 s in my room without explaining anything…’ (Female with multiple sclerosis)
Provide a holistic care
Care for the person in addition to his/her organs
[I would like ] That obstetrician gynecologists (…) finally listen to their patients… [ I would like ] care that is no longer only chemical, surgical or medical, but also human, psychological and dietary (endocrine disrupters)…’ (Female with endometriosis)
Personalise care and care goals
Provide personalised care rather than standardised ‘one size fits all’ care
‘Practitioners should behave like researchers, instead of simply following recipes they know about specific situations.’ (Male with COPD)
Improve patients' care pathway
Know when to pass the baton
‘… [ My physician ] should learn not to hesitate, for one second, before consulting a colleague's opinion.’ (Male, 66 years old with osteoarthritis)
Improve patients' follow-up after acute events or disease remission
‘Do not neglect the support (explanations on treatments, potential events or who to contac…) for patients who leave the hospital so that they do not suddenly find themselves alone whilst being very surrounded and cared for in the hospital.’ (Female with thyroid cancer)
Adapt patients' treatment and home care
Emphasise the use of non-pharmacological treatments, if possible
‘I would have preferred to be followed-up by a physiotherapist from the beginning and benefit from physical therapy rather than to be force-fed with drugs which only had a brief effect (…) and to which I became dependent.’ (Female patient with diabetes and ankylosing spondylitis)
Allow flexibility in drug intakes
‘I would like to take my medicines at the time of my choice.’ (Male with HIV infection)
Avoid unnecessary procedures/tasks
Avoid low-value exams and tests
‘Actually use all results from ordered tests. We sometimes have the impression that tests are performed because ‘it’s the protocol,’ but that decisions are taken without knowing test results.’ (Female with Hashimoto’s thyroiditis)
Develop prevention
Improve prevention for chronic conditions
‘If I had a magic wand my first wish would be that health professionals do not wait flares to act.’ (Male with high blood pressure and a myeloma)
Improve patients' autonomy
Improve patients' capacity for self-management
‘Give me the possibility to carry a more appropriate treatment in the event of an acute adrenal insufficiency where vomiting prevents me from taking my hydrocortisone. This treatment would be available at any time as a pen filled with an injectable product, ready to use, similar to the treatment for diabetic patients.’ (Female with adrenal insufficiency)
Improve the support of patients with chronic condition
Involve family and entourage in care
‘Patients’ entourage should also be more involved. Thus, all changes generated by the pathology and/or the treatment that goes with it are better understood. This would avoid unnecessary conflicting reactions.’ (Female with high blood pressure and asthma)
Provide patients with the best information adapted to them (n=168) Provide patients written information on their conditions
‘I would have liked to know immediately everything about vitiligo. How it works, what elements of the body are defective, how to explain it. I would also have liked that someone told me about all existing solutions right away. In fact a notebook or a leaflet explaining all this (…) would have allowed me to have all this information without having to look for them on the unreliable websites.’ (Female with vitiligo)
  • *All texts were translated from French to English.

  • COPD, chronic obstructive pulmonary disease.