Patient Representatives’ Perspectives on Healthcare at the Time of COVID-19 and Suggestions for Care Redesign After the Pandemic: A Qualitative Study in Twenty-Four Countries

Figures & data

Table 1 Characteristics of the Patient Representatives

No	Age Group (Years)	Years Working as a Representative	Sex	Country	Type of Patient Organisation/Disease Area	Is a Patient Her/Himself
1	40–49	14	Female	Argentina	Diseases of the musculoskeletal system and connective tissue
2	60–69	36	Male	Australia	Certain infectious and parasitic diseases	x
3	40–49	0.4	Female	Australia	Neoplasms	x
4	60–69	26	Female	Austria	Diseases of the musculoskeletal system and connective tissue	x
5	50–59	34	Female	Austria	Diseases of the musculoskeletal system and connective tissue	x
6	40–49	16	Female	Austria	Frailty and cognitive impairment due to ageing
7	40–49	21	Female	Austria	Diseases of the digestive system	x
8	30–39	6	Female	Austria	Diseases of the musculoskeletal system and connective tissue	x
9	50–59	10	Male	Azerbaijan	Chronic disease, general
10	60–69	20	Female	Canada	Diseases of the musculoskeletal system and connective tissue	x
11	60–69	7	Female	Canada	Diseases of the musculoskeletal system and connective tissue	x
12	60–69	25	Male	China	Chronic disease, general
13	50–59	12	Female	Cyprus	Diseases of the musculoskeletal system and connective tissue	x
14	50–59	20	Female	Denmark	Diseases of the musculoskeletal system and connective tissue	x
15	20–29	8	Male	Egypt	Certain infectious and parasitic diseases
16	60–69	31	Male	Germany	Diseases of the musculoskeletal system and connective tissue	x
17	60–69	27	Female	India	Neoplasms	x
18	30–39	5	Male	Iran	Endocrine, nutritional and metabolic diseases
19	50–59	5	Female	Israel	Diseases of the musculoskeletal system and connective tissue	x
20	50–59	8	Female	Italy	Diseases of the musculoskeletal system and connective tissue	x
21	40–49	25	Female	Italy	Diseases of the musculoskeletal system and connective tissue	x
22	50–59	20	Male	Japan	Diseases of the musculoskeletal system and connective tissue	x
23	50_59	9	Female	Japan	Frailty and cognitive impairment due to ageing
24	70–79	16	Male	Mexico	Neoplasms
25	50–59	13	Female	Portugal	Diseases of the musculoskeletal system and connective tissue	x
26	40–49	12	Male	Russia	Certain infectious and parasitic diseases
27	40–49	15	Female	Senegal	Certain infectious and parasitic diseases
28	50–59	20	Female	Senegal	Certain infectious and parasitic diseases
29	50–59	28	Female	S. Africa	Diseases of the musculoskeletal system and connective tissue
30	50–59	24	Female	Uganda	Endocrine, nutritional and metabolic diseases
31	20–29	8	Male	UK	Diseases of the musculoskeletal system and connective tissue	x
32	50–59	13	Female	UK	Diseases of the musculoskeletal system and connective tissue
33	40–49	4	Female	Ukraine	Certain infectious and parasitic diseases	x
34	30–39	10	Female	USA	Neoplasms	x

Table 2 Main Themes and Related Codes

Main Themes	Codes	No.*
Theme 1: Increasing inequity in the context of care	Overload of the health system	1
	Reduced care and support	2
	Test accessibility/affordability/availability/frequency/necessity	3–7
	Restrictions accommodation and transportation	8–9
	Fear of getting COVID-19/ infecting others/side effect medication/suboptimal care	10–11, 13–14
	Fear (and real) drug shortages	12
	Loneliness and mental health	15
	Managing chronic disease in times of COVID-19	16
	Reduced physical functions	17
	Reduced preventative measures	18
	Restrictions in the basic supply	19
	Increased solidarity, empathy and respect	20
	More time to manage daily life and own health/to think and reflect	21–22
	Needs for extra support	23
	Migrants/Older adults/People with dementia/People with physical disability/Rural residents/ Socio-economically-disadvantaged	24–29
	Disease stigma (other than COVID-19), discrimination and racism	30
	Violence	31
	Changes over time: Positive and negative	59
2. Stigma and discrimination in cultural context	Stigma, COVID-19 infection/other diseases	32
	Stigma, COVID-19 testing	33
3. Telehealth is indispensable now and in the future, but with limitations	A learning experience	34
	Creativity	35
	Positive statements (incl. opportunity)	36
	Not sufficient	37
	Technical, physical and usability barriers and accessibility	38
4. Patient representatives as essential connectors and influencers	Creating a safe environment/Making efforts to continue care	39, 45
	Empowering communication/Having trained and competent Healthcare providers/ Healthcare providers’ communication that considers patients’ COVID-related fears/Re-assuring and honest communication	40, 42–43, 46
	Financial support continued	41
	Information from a trusted person	44
	Communicator and influencer	47
	Support to others	48
	Being challenged as representatives/advocates and reasons	49
	A reluctant influencer in vaccination	50
	Vaccination advantages include hope	51
	Vaccination availability/freedom of choice/ information needed (types of information needed)/not the ultimate solution/ uncertainty	52–56
	COVID-19 as an opportunity (other than telehealth)	57
	Understanding both sides	58
	Changes over time: positive and negative	59

Notes: *Code numbers correspond to Supplemental Table D. Codebook — Codes and definitions.