Appendix 1. Ranking process to identify patients priorities for improvement

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doi: 10.1136/bmjqs-2020-011219 –11. :1 0 2020; BMJ Qual Saf , et al. Tran V-T

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Appendix 3. Patients’ characteristics (n=3002). Weighted data were obtained after

calibration on margins for sex, age categories and educational level by using data from a

national census describing the French population self-reporting at least one chronic condition.

Characteristic Weighted data

(n=3002)

Unweighted data (n=3002)

Age – mean (SD) 55 (17) 43 (14)

Female Sex – no. (%) 1586 (53) 2534 (84)

Education level – no. (%) Low

Middle school or equivalent

High school or equivalent Associate’s degree Higher education 293 (10) 1691 (56) 415 (14) 263 (9) 340 (11) 75 (2) 465 (15) 299 (10) 639 (21) 1524 (51) Chronic conditions – no. (%)

1 2 3 >4 1064 (35) 796 (27) 409 (14) 733 (24) 1562 (52) 647 (22) 347 (12) 446 (15) Time since first chronic condition diagnosis (years) –

mean (SD) 18 (15) 13 (13)

Conditions* Asthma

COPD and other respiratory diseases Diabetes

Thyroid disorders

High blood pressure Dyslipidemia

Cardiac or vascular diseases Chronic kidney diseases Chronic low back pain Rheumatologic conditions Systemic conditions Digestive conditions Neurological conditions

Cancer (including blood cancer) Dermatologic conditions Depression 179 (6) 122 (4) 372 (12) 161 (5) 456 (15) 197 (7) 407 (14) 461 (15) 387 (13) 776 (26) 116 (4) 388 (13) 490 (16) 239 (8) 422 (14) 203 (7) 183 (6) 231 (8) 171 (6) 221 (7) 225 (7) 74 (2) 167 (6) 185 (6) 197 (7) 649 (22) 144 (5) 306 (10) 416 (14) 179 (6) 321 (11) 157 (5) *Total exceeds 100% because patients have multiple chronic conditions; COPD: chronic obstructive pulmonary disease

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Appendix 4a. Difference in patients’ priorities to improve consultations (n=840) between

the weighted and unweighted dataset. Importance of each area of improvement is

represented by its odds to be ranked better than the reference area of improvement

“Allow

flexibility in drug intakes”. Weighted data were obtained after calibration on margins for sex,

age categories and educational level using data from a national census describing the French

population self-reporting at least one chronic condition.

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Appendix 4b.

Patients’ priorities to improve consultations in subgroups defined by

multimorbidity (n=840). Importance of each area of improvement is represented by its odds

to be ranked better than the reference area of improvement “Allow flexibility in drug intakes”.

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Appendix 4c. Patients’ priorities to improve consultations in subgroups defined by the

time

since the diagnosis of the first chronic condition (<8 or ≥ 8 years) (n=840).

Importance of each area of improvement is represented by its odds to be ranked better than

the reference area of improvement “Allow flexibility in drug intakes”.

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Appendix 4d.

Professionals’ assessments of the complexity involved in implementing

actions to improve consultations (n=38)

Area of improvement Median Interquartile

range

Enable some drug holidays, if possible 7 1

Reduce the number of drug intakes per day 4 1.7

Reduce the number of medications per intake 5 1.2

Change treatments' shape, taste or size 6.5 1.5

Find treatment strategies that minimize adverse effects 4 1.2

Allow flexibility in drug intakes 3.5 2.2

Propose drug/treatments that are easier to use/take 4 0.2 Propose drug/treatments that are easier to transport 3.5 1.4

Propose drug/treatments that are easier to store 5 2

Emphasize the use of alternative medicines, if possible 5 3 Emphasize the use of non-pharmacological treatments, if possible 6 3.2

Soften dietary hygiene rules 4.5 1

Avoid low value exams and tests 5 3

Avoid low value treatments 4 1.5

Do not re-ask an already available information or test 6.5 4.2 Enrich existing health records with more information 4.5 1.4

Simplify self-monitoring at home 5 2.2

Prevent exacerbations rather than wait for them (secondary prevention) 7 2 Improve primary prevention for chronic conditions 6 3.4 Provide patients adequate information on their conditions at adequate times 4 2.2

Spend more time to explain things to patients 5 4.2

Provide patients written information on their conditions 4 3.4 Help patients understand/learn the medical language 5.5 2.2 Provide patients information on research advances 3 2.2

Improve patients' capacity for self-management 4 1.4

Teach patients methods to avoid forgetting medications 3.5 4

Know when to pass the baton 6 3

Improve patients' follow-up after acute events or disease remission 5 2.4

Regular check-ups for complex patients 3 2.2

Improve patients' journey during the diagnosis of chronic conditions 5 2.2 Improve continuity of care (moving away, changing hospitals) 6 1.7

Involve family and entourage in care 5.5 2

Facilitate access to psychological care/support for chronic patients 3.5 2.5 Train care providers to act like coaches for patients 5.5 3

Introduce patients to patients' associations 2.5 2

Take into account patients' contexts 4 1.2

Provide personalized care rather than standardized “one size fits all” care 5 3.2

Identify common goals with patients 4 1.2

Involve patients in care decisions 3.5 2.5

Be more proactive in meeting patients’ needs 6 3.4

Avoid stereotyping people 5.5 1.2

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Avoid a defeatist and fatalistic attitude 5 2.2

Avoid judgmental or paternalistic attitudes 6 1.4

Be careful of words used with patients 3.5 3

Learn humility 5.5 2.5

Benevolence and empathy from care professionals 4 2.2

Listening, openness and sharing from care professionals 6 3

Trust patients' expertise in their diseases 3 3.2

Use validated patient reported outcomes to support patients' words 4.5 2.8

Do not look down on patients 3.5 2.5

Improve how some conditions are acknowledged by health professionals 6 1.8 Encourage dialogue between care professionals and patient associations 4 2.2 Avoid “siloed care” (care focused on single organs) 5.5 3 Care for the person in addition to his/her organs 4.5 3.2 Account for the interactions between different conditions and treatments 4.5 1.4

Improve pain management 3.5 1.8

Avoid neglecting some medical problems or symptoms 4.5 2.4

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Appendix 5a. Difference in patients’ priorities to improve care structures (n=802)

between the weighted and unweighted dataset. Importance of each area of improvement is

represented by its odds to be ranked better than the reference area of improvement “Improve

the architecture and design of care facilities”. Weighted data were obtained after calibration

on margins for sex, age categories and educational level using data from a national census

describing the French population self-reporting at least one chronic condition.

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Appendix 5b,

Patients’ priorities to improve care structures in subgroups defined by

multimorbidity (n=802). Importance of each area of improvement is represented by its odds

to be ranked better than the reference area of improvement “Improve the architecture and

design of care facilities”.

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Appendix 5c Patients’ priorities to improve care structures in subgroups defined by time

since the diagnosis of the first chronic condition (<8 or ≥ 8 years) (n=802). Importance of

each area of improvement is represented by its odds to be ranked better than the reference

area of improvement “Improve the architecture and design of care facilities”.

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Appendix 5d.

Professionals’ assessments of the complexity involved in implementing

actions to improve care structures (n=78)

range

Reduce the delays to obtain appointments 4 3

Propose patients to move their appointments up when an cancel occurs 4 6 Simplify the process for getting appointments and tests 6 2 Allow patients to choose the date and time of consultations/tests 6 2.8

Access to specific emergency care if needed 5 4

Group visits/tests on same days 6 3

Group visits/tests in same places 5 3

Create “one stop shop” structures where patients can get all health visits and

tests done " 3 3

Accelerate patients' referral to the right doctor 5.5 2

Help patients find care professionals with human qualities 4.5 3 Help patients find care professionals with experience in their conditions 3 1.8 Improve the flow of patients in the care structure (waiting times, administrative

steps, etc.) 4 2

Provide patients an agenda for their future care activities 5 4

Change consultations/tests intervals 6 2

Anticipate delays in consultations to better respect schedules 4.5 3

Propose longer consultations 4.5 4.4

Diminish the administrative burden on care providers 4 2.2 Enable trained nurses to supplement more of the medical staff workload 5 3

Meet expert patients 5 3

Organize patient groups and activities 4 2

Facilitate the understanding of test results (graphs, data visualization, etc.) 7 3 Systematically provide patients copies of medical reports and results 3 3 Create medically certified online information centers 5 3

Develop online training programs for patients 5 2.8

Improve the coordination between care professionals 3 3

Avoid contradictions in the care team 5.5 4

Improve the sharing of health records and information between care

professionals 5 3

Identify a “care conductor” to lead the care team 5 3

Account for all care providers' opinion independently from their disciplines or

hierarchy 4 4

Care should not rely on poorly supervised residents 5 3

Collective intelligence from my care team 7 3

Enable multidisciplinary care 4 2

Implement tele expertise 4 3

Create a \listener\" line for patients" 5 2.5

Develop systems for patient-physician communication outside of consultations 4 2 Identify a point of contact person for exchanges between patients and the care

team 3 2

Increase the number of non-medical personals in clinics/hospitals 5 3.8 Change the attitude of reception staff and non-care professionals 4 2.8

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Improve the architecture and design of care facilities 2 3

Improve privacy in care structures 5 3

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Appendix 6a. Difference in patients’ priorities to improve care structures (n=745)

between the weighted and unweighted dataset. Importance of each area of improvement is

represented by its odds to be ranked better than the reference area of improvement “Develop

online translation services, accessible for all caregivers and patients”. Weighted data were

obtained after calibration on margins for sex, age categories and educational level using data

from a national census describing the French population self-reporting at least one chronic

condition.

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Appendix 6b, Patients’ priorities to improve the healthcare system in subgroups defined

by multimorbidity (n=745). Importance of each area of improvement is represented by its

odds to be ranked better than the reference area of improvement “Improve the architecture

and design of care facilities”.

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Appendix 6c. Patients’ priorities to improve the healthcare system in subgroups defined

by time

since the diagnosis of the first chronic condition (<8 or ≥ 8 years) (n=745).

Importance of each area of improvement is represented by its odds to be ranked better than

the reference area of improvement “Improve the architecture and design of care facilities”.

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Appendix 6d.

Professionals’ assessments of the complexity involved in implementing

actions to improve care structures (n=33)

range

Soften gatekeeping rules 5.5 2.7

Simplify refill processes 6.5 2

Change the legal limit between two refills 5 2

Change sectorization rules for health structures 6 3

Create generic drugs with same shape and color as branded drugs 5.5 3.8

Homogenize the number of pills per drug box 7 5

Limit pharmacists' ability to replace prescription drugs 6 2 Accelerate the approval for new treatments already available in other countries 5 3 Use filled prescriptions instead of medication boxes 2 2 Develop systems to avoid medication shortages in pharmacies 4.5 2.8 Create re-usable medical devices (e.g. inhalers) to avoid waste 7 2.8

Re-approve some drugs withdrawn from the market 4 1.8

Limit bureaucracy and soften administrative tasks 4 2

Quicken administrative procedures 4.5 3

Get human help for administrative tasks 3 2

Create one-stop-shop structures to get state help 5 2

Administrative acknowledgment of some conditions 5 2.6

Enable home care (consultations) 7 2

Create a repertoire of care professionals specialized in specific diseases or

treatments 6.5 3

Encourage the geographic dispersion of specialists (not only in major cities) 3.5 2.8

Anticipate the retirement of physicians 6 0.8

Improve patients' ability for transportation and parking 6 2

Home delivery for medications 4 2

Develop online translation services, accessible for all caregivers and patients 4 0.8

Prevent doctors from exceeding their fees 4 2.6

Reduce the amount of advances of expenses 4 3.6

Reimburse transportation costs 7 2.2

Increase the number of health interventions covered by the National health

Insurance 3.5 1.8

Reimburse opportunity costs 3 2

Lower the cost of care 5 1.8

Facilitate home fitting for patients 4 1.8

Facilitate the access to home care (nurses) 5 3.3

Facilitate home support (housework, grocery shopping, etc.) 8 5

Help informal caregivers 5.5 1.8

Facilitate access to work for sick people 5 2.8

Adapt work conditions for sick people 6.5 5.8

Adapt work schedules for patients 5 2.8

Adapt work spaces for patients 7 2

Help patients get professional retraining 4.5 4.3

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Improve care professionals' knowledge in specific conditions/treatments 7 3.8 Ensure that adequate information on every disease is accessible to all care

providers 5.5 2.6

Develop nationwide “registries of medical mistakes” to avoid repeating errors 5.5 2.8 Develop clear care protocols/guidelines for all conditions 4 2.8 Involve patients in the elaboration of care guidelines 3 2 Improve the general public view on conditions or treatments 3 5 Provide patients “official” documents to prove people that they are ill 4 2.8 Avoid discrimination for chronic patients (insurance, loans...) 5 2