Primary Care Physicians’ and Patients’ Perspectives on Equity and Health Security of Infectious Disease Digital Surveillance

William Chi Wai Wong; Ivy Yan Zhao; Ye Xuan Ma; Wei Nan Dong; Jia Liu; Qin Pang; Xiao Qin Lu; Alex Molassiotis; Eleanor Holroyd

doi:10.1370/afm.2895

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Table 1.

Demographic Summary of Participants (N = 40)

Characteristic	No.	Characteristic	No.	Characteristic	No.
Primary Care Physicians (n = 16)
Age, y		Postgraduate training		Qualification
29-39	3	General Medicine	11	Assistant Physician	1
40-49	10	Infectious Diseases	1	Resident	2
50-59	2	Ophthalmology	1	Associate Chief Physician	7
61	1	Health Management	1	Chief Physician	6
Sex		Chinese Medicine	1	Length of employment, y
Female	8	Surgery	1	1-10	3
Male	8	Region		11-20	6
		Northern China	8	21-30	4
		Southern China	8	31-40	3
Patients (n = 24)
Age, y		Occupation		Educational level attained
21-29	5	Professionals	4	Bachelor’s degree and above	10
30-39	2	Managers	2	Vocational school	7
40-49	9	Semi-skilled labor	5	Senior high school	4
50-59	3	Self-employed	3	Junior high school	3
60-69	4	Student	3	Marital status
70	1	Retired	7	Married	18
Sex		Region		Single	6
Female	13	Northern China	14
Male	11	Southern China	10

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Table 2.

Summary of 5 Themes and Exemplar Quotes From Participants

Themes	Primary Care Physician Quotes (region of China, sex, age in y)	Patient Quotes (region of China, sex, age in y)
Potential impacts on trust and informed consent	“Health QR codes used in mainland China during the epidemic period are good examples of making use of AI” (SC, male, 29) “Artificial Intelligence (clinical decision support system) can improve the issue of clinical manpower shortage by allowing telehealth and automated diagnosis program” (NC, female, 47; SC, female, 46) “DDS cannot deal with an issue flexibly and comprehensively, it is more about a process operation” (SC, female, 46; NC, female, 47) “It is difficult for DDS to analyze the psychological problems of a patient” (SC, female, 46) “Patients might worry about that I am using their data for a hidden income or something else, although they may not necessarily say it directly” (SC, male, 40) “Giving informed consent is troublesome, which would cause patients to have suspicion and confusion” (NC, female, 49) “Both primary care physicians’ and patients’ knowledge of DDS is insufficient. It is very difficult for me to do informed consent to patients. I think this is not reasonable either” (NC, female, 34)	“I support the health codes used by the government in COVID-19 pandemic, I don’t think there is anything to worry about” (NC, male, 70; SC, female, 63; NC, male, 44) “In the hospital, it [DDS] may help with the detection of some infectious diseases, it brings convenience to us” (SC, female, 27) “Informed consent and a confidentiality agreement are necessary to protect patients’ data. And the informed consent should be performed by primary care physicians” (NC, male, 58; NC, male, 46)
Need for autonomous decision making	“To meet hospital and state demands, primary care physicians had to encourage patients to use health code” (SC, male, 46) “But we still have a little doubt (the effectiveness of using health code for pandemic control) in our hearts” (NC, female, 34) “I understand the ID reporting strategies are for better control the pandemic. But I also want to know how the government will deal with our data. My own opinion is that I do not want our privacy to be disclosed. I hope government can do something to make a balance between ID control and our citizen rights” (NC, female, 34) “GPs will not absolutely dependent on DDS. We will follow a process of manual verification. Patients do not need to worry about this” (NC, female, 61) “To meet the ID control requirements of national institutions, local governments and primary institutions usually applied more strict control strategies then national instructions” (SC, male, 40)	“You are not allowed to go anywhere without showing the health code, and you cannot even get on the bus. What should you do? So, it’s useless for you to think too much” (SC, female, 45) “If you say that you go to government departments to complain about your privacy disclosure, in fact, I think it is useless” (NC, male, 70) “The complaint process is not clear, there is no channel to complain about your privacy issue” (NC, male, 46) “Chinese value of filial piety requires citizen’s obedience to leaders and the society” (SC, female, 63) “As long as you get a fever, no matter what kind of illness (infectious disease or common cold) you have, you must be quarantined first” (NC, female, 21)
Potential discrimination associated with ID in China	“People still fear and have discriminations on infectious diseases in China. The usage of DDS would increase the detection and identification of ID patients. Patients would afraid they would be exposed to the public” (NC, female, 61) “It is disgraceful to be infected with COVID-19. If people know that you had been in contact with COVID-19 patients, everyone will isolate you, fearing that you will spread virus to them. It will then affect your family. People will think that you have passed your virus to your family members. So, your family will be discriminated” (NC, male, 42)	“If you had a fever and you input your temperature into health code system, it would result in a yellow code. I had an appointment of CT, but they refused to let me access the hospital due to the yellow code. I was quite panic at the time” (NC, female, 21) “I don’t know how to say it, but I can understand it anyway. People feel panic when they see your code is yellow” (NC, male, 43) “The government should provide some technical introductions to us about the DDS. The more detailed they explain, the less worry we may have” (NC, female, 45; SC, female, 45)
Risk of inequity and disparate care	“Older people and children may not have much knowledge about information security, so they will be easier cheated” (NC, female, 34) “It is unfriendly for some special groups of people. For example, some older people do not use smart phones or disabled people don’t know how to use health code, etc” (NC, male, 42) “Patients in small places might be [sic] lack of ethical awareness to protect their rights” (NC, female, 34) “The number of patients is small due to the lower population density in small places. ID patients might have to be more cautious as they concerned they would be recognized more easily by other citizens” (NC, female, 47) “Artificial intelligence mistakes cannot be fully avoided” (SC, male, 29) “For example, if the information of ID patients did not be extracted, it will affect the algorithm of AI” (NC, male, 42)	“People in southern region are open-minded and accept new technologies. It may be easier to promote DDS. There will be more discrimination against infectious diseases in the north because of low acceptance” (NC, male, 58) “The exposure of travel trajectory has a great influence on people, especially for special groups (such as celebrities, sexual minorities, and sexual workers), which is unacceptable” (SC, male, 33 ) “Some older people’s mobile phones cannot scan health codes” (NC, female, 22; SC, male, 69) “Ethnic minorities in China usually have lower education level, may be lack of knowledge of DDS and ethics” (SC, female, 63)
Health data security: whose responsibility is it?	“I think there still does not exist a leading organization, which can coordinate between countries, but at present it seems like our World Health Organization needs explore more in this area” (NC, male, 40) “Countries may tend to supervise each other, and accuse each other of loopholes in the prevention and control of infectious diseases” (NC, male, 40) “Data should be decrypted and the access must be restricted” (NC, female, 34) “Disease symptoms, sources of infection, transmission routes, and treatment records need to be extracted” (NC, female, 47)	“The country you shared data with may be quite different from our country. Different system, policy and culture. Your freedom may be restricted in that country if you shared your ID information to them. For example, international students, tourists, and expatriates, they have to pay for high cost of medical care without buying medical insurances” (NC, female, 45) “You only extract this patient’s disease information rather than his name, home address, and contact information. Extracting purely pathological information and medication information is acceptable for me” (SC, male, 33)

AI = artificial intelligence; CT = computed tomography; DDS = digital detection surveillance; GPs = general practitioners; ID = infectious disease; NC = northern China; QR = quick response; SC = southern China.