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Table 2 Review of included studies

From: Patients’ support for health information exchange: a literature review and classification of key factors

# Reference Country Method Targeted population, sample size Main results and recommendations
1 Agaku et al. (2014) [27] USA Quantitative study (survey) US adults aged ≥18 years, 3959 respondents Majority of respondents expressed data breach concerns when their protected health information was being exchanged between healthcare professionals by fax or electronically. Respondents were more likely to withhold their medical information when they perceived they knew very little about how their medical records were used.
2 Ancker et al. (2012) [7] USA Quantitative study (random-digit-dial telephone survey) Adult New York State residents, 800 respondents Majority of respondents supported HIE among healthcare providers owing to improving quality of care. They also endorsed physicians to access their data without requesting for consent in emergencies. Privacy and security concerns were also raised by 68% of respondents. The study stated that consumers were supportive of HIE whether the architecture was centralized, federated, point-to-point or hybrid model.
3 Ancker et al. (2013) [23] USA Quantitative study (survey) Adults (national wide), 100 respondents Majority of respondents believed that HIE could improve healthcare quality. Respondents whose physicians used EHR were more likely to support HIE.
4 Beard et al. (2012) [31] N/A Literature review Patients The main challenges associated with HIE: cost and security concerns, confusion around responsibilities and rights of the various players, liability issues and tensions between flexible access to data and flexible access to physicians.
5 Caine & Hanania (2013) [32] USA Qualitative and quantitative (survey, interview) Patients, 30 respondents Two factors affecting patients to support sharing of their medical records were type of information and type of recipient. Patients desired more privacy control over which health information should be shared with whom. Patients also preferred less sharing of sensitive versus less-sensitive information.
6 Campos-Castillo & Anthony (2015) [40] USA Quantitative study (survey) US adults (national wide), 4753 respondents Patients with a provider using an EHR was more likely to withhold personal information because of privacy concerns. US immigrants were more prone to ever withhold information from a provider.
7 Chhanabhai & Holt (2007) [29] New Zealand Quantitative (cross-sectional survey) Health consumers visiting healthcare practices, 300 respondents Participants were highly worried about the security and privacy of their online health records. Participants were concerned about hackers (79.4%), vendor access (72.7%), and malicious software (68%).
8 Dhopeshwarkar et al. (2012) [70] USA Quantitative study (random-digit-dial telephone survey) Residents in the Hudson Valley of New York State, 170 respondents Majority of consumers desired to be asked for a permission before various parties, including their clinician, could see their health records through HIE. They also asked to check who has viewed their information (86%), to stop electronic storage of their data (84%), to stop all viewing (83%), and to select which parts of their health records can be shared (78%).
9 Dimitropoulos & Rizk (2009) [60] USA Conceptual Policies, and state laws related to the privacy
and security of health information
The study proposed a number of policies to protect health information and facilitate HIE such as: consent and permission, standard authentication and audit policies, harmonizing state privacy laws, and consumer education and engagement.
10 Dimitropoulos et al. (2011) [6] USA Quantitative study (random-digit-dial telephone survey) English-speaking adults, 1847 Majority of respondents expressed that they were concerned about privacy (70%) and security of HIE (75%). Concerns were meaningfully greater among employed individuals, 40 to 64 years old, and minorities. Around 60% just supported HIE for treatment purposes. 52% desired to choose which providers should access and share their data.
11 Furukawa et al. (2014) [53] USA Quantitative study (mail survey) Office-based physicians, nationwide HIE with other providers was mainly limited in office settings, with only 14% sharing data with providers outside their organization. More policies are required to support HIE and patient engagement in data exchange.
12 Galpottage & Norris (2005) [61] New Zealand Conceptual Patients This study described the four characteristics of e-consent systems as protecting privacy, informing patients, capturing permission, and releasing information. This study recommended that consumers should be able to see who has accessed what part of their health information and why.
13 Grande et al. (2013) [59] USA Quantitative study (online survey) Adults, 3336 Willingness to share electronic health information is affected by purpose for using information (research, quality improvement, or commercial marketing) and users (university hospitals, commercial enterprises, or public health departments). Data sensitivity was not a significant factor.
14 Hincapie et al. (2011) [46] USA Qualitative study (focus group) Physicians, 29 Respondents reported that detecting drug-seeking behavior and doctor shopping, preventing duplicative testing, and increased efficiency of clinical information gathering were the most important benefits of HIE. The limited availability of data in the HIE system was mentioned as the most important disadvantage.
15 Kaelber & Bates (2007) [66] USA Conceptual Patients HIE can improve patient safety through improved medication information processing, improved laboratory information processing, improved radiology information processing, improved communication among providers, improved communication between patients and providers, and improved public health information processing
16 Kim et al. (2015) [14] USA Quantitative study (random-digit-dial telephone survey) Californians, 800 Healthcare consumers believed that HIE would aggravated privacy and security concerns. They desired more transparency in HIE such as individual control, who can access, and the purpose for use of data. Respondents were more prone to share deidentified health information for research purposes.
17 Kullberg et al. (2015) [50] Sweden Quantitative analysis (survey) Patients with cancer, 104 Majority of patients in oncological inpatient care were not satisfied with information exchange and information provision coming from doctors and nurses. This deficits increased patient safety risks such as medication errors and falls. Better policies for information exchange are required.
18 Letrilliart et al. (2009) [43] France Quantitative analysis (survey) Patients, oncologists, general practitioners, nurses and other professionals, 48 members Shared medical records for breast cancer patients would be organized in a way that patients, physicians, medical auxiliaries and other healthcare professionals were authorized to insert a piece of information. Lack of interactions, the complexity of the record, and threats to the confidentiality of patient sensitive data were the main concerns related to shared records.
19 McGraw et al. (2009) [55] USA Conceptual HIE systems This study recommended that to build public trust into HIE, a comprehensive privacy and security framework is needed to set clear rules for access to, use of, and disclosure of personal health information for all entities engaged in HIE. This framework also requires adequate oversight and accountability.
20 O’Donnell et al. (2011) [11] USA Quantitative analysis (telephone survey) English-speaking residents of the Hudson Valley of New York, 170 Individuals who were caregivers for chronically ill patients were more likely to support physicians who used HIE. Individuals who earn more than $100,000 yearly were also more prone to support physician HIE. This study showed that males who used the internet frequently were more likely to endorse HIE.
21 Or & Karsh (2009) [38] N/A Systematic literature review Patients This study showed that majority of existing literature focused on patient-related factors to predict acceptance of consumer health information technology. The patient factors including sociodemographic characteristics, health- related variables, and prior experience with computer/health technology were the most cited factors.
22 Park et al. (2013) [10] South Korea Quantitative (longitudinal survey) Patients, 730 (first round), 306 (second round) Majority of respondents were willing to accept HIE due to improved quality and reduced healthcare bills, in spite of information safety and security concerns. People who experienced the HIE were more comfortable with the process of obtaining consent. This study showed that males respondents in their 40s and 50s were more likely to endorse HIE.
23 Patel et al. (2011) [68] USA Quantitative analysis (survey) low-income, ethnically diverse consumers, 214 This study showed that a higher proportion of white and non-Hispanics (69%) expressed support for HIE compared to non-White or Hispanic individuals. Around 61% expressed support for HIE amongst their providers. This study recommended that considering cultural and socio-economic issues can be vital for achieving widespread support for HIE.
24 Patel et al. (2012) [12] USA Quantitative analysis (survey) English speaking adults, 117 respondents The more consumers felt potential benefits of HIE, they became more willing to support HIE. College education and prior experience using the internet could affect the level of consumers’ support for HIE. This study recommended that better policies should be made to demonstrate potential benefits of HIE and address privacy and security issues especially for individuals who are less educated.
25 Shield et al. (2010) [45] USA Qualitative study (observation, interview, focus group) Patients, 170 clinical encounters, three focus groups with clinic
Implementation of EHR (as the most important requirement of HIE) improved the level of patients’ trust in their relationship with physicians. It also fostered the sharing of medical information. Patients also reported the concerns for hacking, lost records, confidentiality breaches, technological malfunction, and viruses.
26 Simon et al. (2009) [9] USA Qualitative study (focus group discussions) Adult community members, 64 The three main issues that emerged from the focus group discussions were concerns about privacy, security and misuse of health data, the potential benefit of HIE to a person’s health and safety, the desire for more information, and education about the consent process. This study recommended that clear educational materials are required to engage consumers in HIE.
27 Tang et al. (2006) [58] USA Conceptual N/A Health information should be shared with patients in ways that enables them to understand and to act on the information contained in their records. Although this helps individuals access their health information, the implementation and use of this system is challenging because individuals have various level of health literacy.
28 Teixeira et al. (2011) [42] USA Quantitative analysis (survey) Persons living with HIV/AIDS, 93 Majority of respondents were more willing to share their personal health information with clinicians involved in their care and less likely to share with non-clinical staff.
29 Tripathi et al. (2009) [19] USA Conceptual Patients Privacy concerns and consent issues were identified as the most important design criteria for the HIE initiatives. This study recommended that there should be a balance between privacy protection procedures and availability as well as accuracy of patients’ medical information to improve the quality, safety, and efficiency of care.
30 Unertl et al. (2012) [22] USA Qualitative study (observation and interview) Six emergency departments and eight ambulatory clinics, 180 h Patient-provider trust was considered as an important factor in HIE systems. The reliability and accuracy of patient medical history reports shared through HIE was a big concern for users. This study recommended that improving HIE adoption depends on understanding the needs of different users.
31 Vest & Gamm (2010) [1] USA Conceptual HIE stakeholders Collecting patients’ health information into a single repository caused security and privacy concerns from patients and control and ultimate usage concerns from providers. HIE were mostly supported by chronically ill patients. The value of HIE should be measured in terms of benefits to all participants (patients, providers, payers, and communities).
32 Wang et al. (2015) [24] USA Quantitative analysis (survey) physicians, medical record staff, and patients, 379 respondents Patients needed more education and communication about the systems that store and exchange their medical information. This study reported that patients believe their privacy may be violated and their privacy should be protected through consent procedures. They expect that the system should improve their relationship with physicians.
33 Wen et al. (2010) [28] USA Quantitative analysis (survey) US adults Hispanic individuals who aged below 65 and used internet frequently were more likely to use the internet to keep track of their medical information through their PHRs. Males who aged above 45 years old were more willing to support HIE. This study recommended that consumer concerns regarding the security of HIE should be addressed.
34 Whiddett et al. (2006) [3] New Zealand Quantitative analysis (survey) Adult primary-care patients, 200 Identity of recipients, level of anonymity, and type of information impacted patients’ attitude towards sharing their health information. They were more likely to share their information between healthcare professionals. Patients were less likely to share their personal information.
35 Wiljer et al. (2008) [47] Canada Qualitative study (workshop) HIT experts, 45 participants This study found that providing a clear definitions for privacy, security and confidentiality can help the implementation of EHRs. The study recommended that patient education, engagement and empowerment can also help consumers better understand the purpose of EHRs.
36 Wright et al. (2010) [25] USA Quantitative (a cross-sectional mail survey) licensed physicians, 1043 Majority of physicians believed that HIE would improve quality of patient care, reduce healthcare costs and save time but they were also concerned about privacy of patients’ data.