Scholarly article on topic 'PHR User Privacy Concerns and Behaviours'

PHR User Privacy Concerns and Behaviours Academic research paper on "Media and communications"

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Abstract of research paper on Media and communications, author of scientific article — Reza Samavi, Mariano P. Consens, Mark Chignell

Abstract Results of an empirical study on the privacy concerns, attitudes, and behaviour of personal health record (PHR) users are presented. The study addressed the following questions: (1) What are the factors influencing privacy concerns of PHR users? (2) To what extent do PHR users read privacy agreements and which factors are in play when they fail to read them. (3) Are the behaviour and attitudes of PHR users consistent with respect to reading privacy agreements and using privacy settings? We infer from the study results that the factors influencing privacy concerns of general online users (as reported in literature) also apply to PHR users. In spite of privacy concerns, 60% of the respondents in our study reported not reading privacy agreements. PHR users who were highly concerned about privacy did not report changing their default privacy settings (as offered in a typical social networking website) in a manner consistent with their stated attitudes towards privacy. Based on the issues identified in the study we conclude with a number of design recommendations for privacy-friendly PHR systems.

Academic research paper on topic "PHR User Privacy Concerns and Behaviours"

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Procedía Computer Science 37 (2014) 517 - 524

International Workshop on Privacy and Security in HealthCare (PSCare14)

PHR User Privacy Concerns and Behaviours

Reza Samavi , Mariano p. consens , maik chigneii

aInformation Engineering, MIE, University of Toronto

Abstract

Results of an empirical study on the privacy concerns, attitudes, and behaviour of personal health record (PHR) users are presented. The study addressed the following questions: (1) What are the factors influencing privacy concerns of PHR users? (2) To what extent do PHR users read privacy agreements and which factors are in play when they fail to read them. (3) Are the behaviour and attitudes of PHR users consistent with respect to reading privacy agreements and using privacy settings? We infer from the study results that the factors influencing privacy concerns of general online users (as reported in literature) also apply to PHR users. In spite of privacy concerns, 60% of the respondents in our study reported not reading privacy agreements. PHR users who were highly concerned about privacy did not report changing their default privacy settings (as offered in a typical social networking website) in a manner consistent with their stated attitudes towards privacy. Based on the issues identified in the study we conclude with a number of design recommendations for privacy-friendly PHR systems.

© 2014 The Authors.PublishedbyElsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/3.0/).

Peer-review under responsibility of the Program Chairs of EUSPN-2014 and ICTH 2014.

Keywords: Information privacy, PHR, privacy management, privacy concern, risk perceptions in data disclosures

1. Introduction

While people gain increasing benefits from sophisticated online services, there are growing concerns about the treatment of personal information online (broadly referred to as privacy concerns). This has led to implementation of legislative and regulatory privacy policy. However, the resulting rules assume that people are reasonably diligent in deciding when and to whom to provide access to their personal data. Massive amounts of personal information on the web are being collected and distributed based mainly on contractual agreements and consensual sharing on a personal basis. However, in many cases, online users are not sufficiently familiar with what they are consenting or agreeing to. When users take responsibility for personalizing their own privacy, ensuring comprehensibility of the consequences is an increasingly complex task, and one that is outside the scope of current privacy regulations.

In this paper, we focus our investigation on issues surrounding the comprehensibility of privacy agreements and settings of online applications when are used by personal health record (PHR) users. Investigating PHR users privacy perspective is crucial as in PHRs the most critical personal information of an individual is at stake1. A PHR system works as a platform with interfaces for a growing number of third party health applications2. Using these applications, users caught in new social contexts that go beyond the familiar patient-clinician health care context. In the new contexts, it is mainly a contractual agreement that guides collection, use and disclosure of an individuals health

* Corresponding author: Fax: +1 416 978 7753, Email: samavi@mie.utoronto.ca (Reza Samavi) E-mail addresses: consens@mie.utoronto.ca (Mariano P. Consens)., chignell@mie.utoronto.ca (Mark Chignell).

1877-0509 © 2014 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.Org/licenses/by-nc-nd/3.0/).

Peer-review under responsibility of the Program Chairs of EUSPN-2014 and ICTH 2014. doi: 10.1016/j.procs.2014.08.077

information3.

We report the results of an empirical study of privacy concerns, attitudes, and behaviour of PHR users. The study was conducted in collaboration with CAPCH (the Canadian Association for People-Centred Health, a community of healthcare advocates). An online survey was completed by 38 members (around 20% of the active members in this community), who were using PHR systems. This study makes contributions to the field of online privacy and PHR system design by addressing the following research questions: (1) What are the factors influencing PHR users privacy concerns? (2) Do PHR users read privacy agreements and if they do not always read them, what are the factors causing users not to read the agreements? (3) Are the behaviour and attitudes of PHR users consistent with respect to reading privacy agreements and using privacy settings? We infer from the study results that the factors influencing privacy concerns of general online users (as reported in literature) also apply to PHR users. In spite of privacy concerns, 60% of the respondents in our study reported not reading privacy agreements. PHR users who were highly concerned about privacy did not report changing their default privacy settings (as offered in a typical social networking website) in a manner consistent with their stated attitudes towards privacy. Based on the issues identified in the study we conclude with a number of design recommendations for privacy-friendly PHR systems

The remainder of this paper is organized as follows. Section 2 reviews the related research. Section 3 describes the model on which this research is based, and the rationale for hypothesis development. Section 3 describes the research methodology and the results of the study. Section 5 reports on the evaluation of the hypotheses and discusses the implications of this study. We conclude in Section 6.

2. Related Work

A number of studies evaluated privacy risks and vulnerabilities associated with PHR systems. Halamka et al. investigated three PHR case studies and concluded that a successful PHR deployment requires careful attention to the policies around privacy and management of patients' consent1. Gallman reported on the privacy implications of PHRs and warned that in the PHR context consumers may think they have more control over usage of their health data than they actually have4. Martino and Ahuja compared two PHR platforms using 11 privacy criteria such as ease of access, readability, and transparency5. They concluded that enabling consumers to audit the compliance of PHR systems with regulatory privacy requirements might significantly affect adoption of PHR systems. Recent surveys have shown that PHR users are very concerned about their privacy. In an empirical study conducted by Archer and Cocosila showed that consumers are concerned about privacy issues that would arise from PHRs6. The Markle Foundation's survey showed that two-thirds of the public (U.S.) are concerned about the privacy of their health information when using PHRs7. A survey conducted by California Healthcare Foundation revealed that 75% of those who were not using PHRs expressed their concerns about the privacy of their information, citing it as a potential barrier to using PHRs8.

Previous studies have formulated a number of scales and factors for measuring privacy concerns. The concern for information privacy (CFIP) scale defines four data-related dimensions of privacy concerns: collection, errors, secondary use, and unauthorized access to information9. The IUIPC (Internet Users Information Privacy Concerns) was an adaptation of the CFIP to address privacy concerns of Internet users. It introduced the factors of control, and awareness of privacy practice10. Xu et al.11 and Smith et al.12 introduced six dimensions influencing an individual's privacy concerns: privacy experiences, privacy awareness, personality differences, sensitivity of service or information involved, trust to the service, and privacy regulations governing data sharing practices. Our goal in this research is not to design yet another scale for measuring individual privacy concerns, but rather to study which aspects of the underlying factors described above are consistent with privacy concerns of PHR users.

While research on online privacy is relatively recent, there are interesting parallels between how people read and use privacy notices and agreements, and how consumers understand and respond to written warning messages and nutritional labels. Researchers in online privacy have examined the relationship between trust, privacy concerns and reading privacy agreements and notices, with particular emphasis on the credibility of websites13,14. Milne et al. found that the perceived comprehensibility of notices has a strong effect on whether or not those notices are read15. Comprehensible notices were more likely to be read, and trusted (see also16 and17). Westin et al. found that 65% of consumers have experienced situations where they did not register at a web site because they believed that the privacy policies were unclear or too complicated to comprehend16.

Several studies showed that inadequate information about privacy risks is not the only reason for ignoring privacy agreements18,19. Anecdotal evidence, confirming that individuals act and behave in ways contradictory to their stated privacy concerns20. Adjerid et al. experimentally validated that users behaviour are not consistent with the actual

privacy risks rather to their relative judgment20. This may be partly due to the fact that individuals tend to discount future cost or benefits causing inconsistencies in personal preferences over time19.

3. Research Model and Hypotheses Development

In the model depicted in Fig. 1, we conceptualize the relationships between different antecedents of PHR users privacy concerns (UPC) and mechanisms for privacy decision making such as reading privacy agreements and using privacy settings. UPC is at the centre of this model. We treat UPC as a dependent variable with respect to the left side of the figure and then as an independent variable with respect to the right side of the figure (as suggested in12). To address our first research question, we aimed to understand the underlying factors affecting privacy concerns of PHR users. These factors are shown in the model with arrows pointing to UPC. The right side of the figure shows the effects of privacy concerns on reading privacy agreements, as a mechanism for privacy decision making. To address the second and third research questions, we extended our investigation to study the consistency of user self-reported behaviours and perceptions concerning whether or not users read (or didn't read) privacy agreements and did (or didn't) use privacy settings in making major privacy decisions. We describe below some antecedent variables for privacy concerns and how we developed our hypotheses based on these antecedents.

Fig. 1. Research model

Factors Moderating Privacy Concerns. We reviewed the research literature on factors moderating privacy concerns of general Internet users (e.g. CFIP9, IUIPC10, Extended IUIPC11) as well as previous surveys addressing privacy issues of PHR platforms7,8. Based on that review, the following factors were selected for further study as potential drivers of PHR users privacy concerns.

Privacy awareness (PAW) deals with the extent to which an individual is informed about privacy practices and associated issues relating to organizations and society in general. Research suggests that privacy concerns of individuals may come into play when individuals become aware of how their data is collected and used, and of what their individual rights are concerning that data usage10. H1: PHR users who are more aware of privacy regulations and practices are more concerned about their PHR privacy.

Information type sensitivity(ISE) deals with individual differences w.r.t. their privacy concerns when the type of information is different. Privacy concerns vary across different types of websites (e-commerce, social networking, financial, and healthcare)11. H2: PHR users with a more granular view of the types of their health data (in terms of privacy) are more concerned about their PHR privacy.

Service type sensitivity (SSE) deals with individual differences w.r.t. their privacy concerns when the types of PHR service differ (e.g. a service to track physical exercise versus a service to track weight). H3: PHR users with a more detailed view of the types of PHR services they are exploiting (in terms of privacy) are more concerned about their PHR privacy. Although H2 and H3 looks similar, the distinction has been made in a number of privacy studies to show that characteristics of websites and services, even if they are using the same type of user data, may affect user privacy concerns differently21,22.

Protection by legislation and regulations (PLP) deals with individual differences with respect to the regulations that govern data usage practices23. H4: PHR users who live in jurisdictions with more robust privacy regulations are more concerned about their PHR privacy.

Privacy experience (PRE) accounts for the extent to which an individual past experience with privacy breaches or intrusions affect the current privacy concerns of the individual24. H5: PHR users who have experienced more privacy breaches in the past are more concerned about their PHR privacy.

Personality Differences (PDIFF) such as being extraverted or introverted and level of social awareness may affect privacy concerns of individuals (25,26). H6: PHR users with different online social personalities will tend to have different attitudes towards their PHR privacy.

Strategies for Privacy Self-management. Multiple factors affect which strategy (e.g. reading privacy agreements and notices, or using privacy settings) will be taken when online users make privacy decisions15,10. Therefore we hypothesized that H7: PHR users who are more concerned about their privacy will also report that they read more privacy agreements when using online services. A research study conducted by Vail et al.27 showed that people react differently when the format of privacy notices change. So we hypothesized that H8: PHR users perceive privacy settings to be a more effective mechanism in privacy decision making than reading privacy agreements.

We also used this empirical study to test PHR users' self-reported actual behaviour in using existing privacy settings, as compared to their self-reported intentions to use privacy settings. We stated the following two hypotheses, H9: PHR users' self-reported behaviour of changing privacy settings is different from their self-reported behaviour of reading privacy agreements. H10: PHR users' self-reported perception of using privacy settings is different from their self-reported actual behaviour ofchanging privacy settings.

4. Research Methodology and Results

We measured PHR users' privacy concerns, attitudes and behaviours using self-reported scales. The survey included 32 questions and were designed for a larger study to measure multiple aspects of PHR users privacy concerns and behaviour. The results that are reported in this paper are based on 16 questions targeting to measure a) respondents' privacy concerns and perceived privacy risks, b) respondents' self-reported behaviour on deciding to read or to ignore privacy agreements c) respondents perception concerning paying attention to privacy settings versus to reading privacy agreements, d) respondents' self-reported privacy behaviour when using social networking websites and their usage pattern of such social networking websites, and e) respondents' demographic background. To increase construct validity we used items from existing scales (available in the literature) where possible. The measurement items were randomly ordered to minimize the unsystematic variation from boredom effects.

The survey was reviewed and approved by the University of Toronto Ethics Review Board. One of the main challenges of the study was participant selection. Since PHR is an emerging technology, similar to the other new technologies, there are certain groups of people who study and know more about the new technologies and are actually willing to adopt it earlier than others. We intended to target these early adopters and understand their perceptions on privacy issues of PHR platforms. We made the survey available to a community of people-centred healthcare advocates in Ontario, Canada (Canadian Association for People-Centred Health (http://capch.ca/). Our preliminary research and interviews with the community organizers showed that a number of participants in this community had already adopted some form of PHR or were willing to adopt it for themselves or for a close relative. Upon completion of the survey a $5 donation was made to the charity of the participant's choice (participants could pick one charity among four well-known healthcare related charities in Canada) as a gesture of appreciation for their time.

Sample Characteristics. There were 38 people who participated in the survey of which responses from 33 respondents were usable. Respondents were well distributed in terms of gender with 16 out of 30 (53%) being male while 14 out of 30 (47%) were female. Respondents had mainly lived in Canada in the past 10 years (28/30), although 7 out of 30 of them also lived for more than a year in United States or some European Union countries. 27 out of 33 respondents were aged 40 or greater. Respondents in this survey were highly educated. Twenty out of 30 (67%) completed graduate school and another 9 out of 30 ( 30%) graduated from some college programs. The average income for 24 respondents who reported their income was in the range $150,000-$200,000. Twenty-six respondents were employed, 2 respondents were retired and only 1 respondent was a student. The internal consistency of the questionnaire for self-reporting PHR user privacy concerns, attitudes and behaviours was tested using Cronbach's Alpha.

Factors Moderating PHR Users' Privacy Concerns. We studied the relationship between PHR user self-reported privacy concerns and other privacy factors as illustrated in the model in Fig. 1. 28 out of 33 (85%) respondents indicated that they were concerned about the usage of their personal information and wanted to know how their data are used. This question was used as an indicator of PHR user privacy concerns (UPC). We tested our hypotheses H1 through H6 with a multiple regression model where UPC was the dependent variable and PAW, ISE, SSE, PLP, and PDIFF were predictors. We aimed to understand how each factor may contribute to predicting the variability of privacy concerns and whether the contribution was significant. Before we built our regression model, we created a correlation matrix for all dependent and independent variables and also ran a number of diagnostic tests. ISE and SSE were strongly correlated and thus we created one variable as the average of those two sensitivities. A new combined

hypothesis then replaced the original second and third hypotheses: H2&3: PHR user privacy concerns change as the type of data they are sharing or type of services they are using change.

We tested H1, H2&3, H4, H5, and H6 using a multi-variable regression model. We ran the model in which all variables were entered into the model (forced entry). The results are shown in Table ??. The regression model achieved statistically significant prediction (F(5, 22)=7.73, p<.001, Adjusted R2=.56), with ISSE and PLP being the significant predictors. Privacy concerns (UPC) tended to be positively related to ISSE (i=.799) and PLP (i=.578), supporting H2&3 and H4. However, the t-test for ¡i values of PAW, PRE, and PDIFF were not statistically significant. Thus, contrary to hypotheses H1, H5, and H6, no significant relationship between those factors and privacy concerns was discovered.

Privacy Concerns and Reading Privacy Agreements. In this step, we studied how PHR users differ in terms of their self-reported behaviour of reading privacy agreements (RPA), their self-reported perception of using privacy settings (PSUP), and their self-reported behaviour of changing default privacy settings of some social networking websites they were members of (PSUB). We tested hypotheses H7-H10 and twe describe below how the results are inferred. When participants were asked how often in the past 12 months they had read (either completely or partially) Privacy Agreements before choosing whether to proceed with an application or service, 9 out of 30 respondents answered never while only 3 out of 30 respondents indicated that they always read the agreements. 9 out of 30 respondents read the privacy agreements much less than half of the time, while 5 out of 30 respondents read about half of the time and only 4 out of the responding participants read privacy agreements much more than half of the time. In Fig. 2-a, we grouped those who always, or much more than half of the time, read the privacy agreements as the readers, those who never or much less than half of the time read as non-reader and those who read about half of the time as undecided. To study whether there is a relationship between pattern of respondents' reading privacy agreements (RPA) with the pattern of respondents' privacy concerns (UPC), we used Spearman's p to find the correlation between participants level of privacy concerns and their willingness to read privacy agreements. There was no significant correlation between RPA and UPC in our sample (r=.124, NS), suggesting that there is no significant relationship between the level of self-reported privacy concerns and the level of willingness to read online privacy agreements. Therefore hypothesis H7 was rejected as we do not have enough evidence, given the size of the sample, to conclude that the H7 null hypothesis is false. Table 1 summarizes the reasons that respondents gave for not reading privacy agreements. Participants could select as many reasons as they thought important with an option to express other reasons. Leading reasons were the time required for reading and digesting privacy agreements, with other reasons cited including the repetitive and boring nature of the task of reading privacy agreements and not being understandable.

Table 1. Results for self-reported reasons for not reading privacy agreements/notices

Reason Respondents

It is too time consuming to read the entire Privacy Agreement. 19/29 (66%)

The data that the application is going to use is not critical to me. 12/29 (41%)

I found reading Privacy Agreements boring. 12/29 (41%)

I only use an application when I trust the provider. 9/29 (31%)

I would not be able to understand the content of a Privacy Agreement. 8/29 (28%)

The existing privacy legislation will protect me if my data is being misused by an online service. 4/29 (14%)

I do not use my real name. 1/29 (3%)

The providers would not act based on what they state in the Privacy Agreements anyway. 1/29 (3%)

Consistency Between Privacy Perceptions and Behaviours. In terms of handling privacy settings, 12 out of 30

respondents indicated that they would almost always pay attention to the privacy settings, followed by 8 out of 30 who said they would often pay attention, 3 out of 30 who would moderately pay attention, 5 out of 30 who would rarely pay attention, and 2 out of 30 who indicated that they would not pay attention to the options and that they would mainly rely on the default privacy settings. In Fig. 2-b we grouped those who always or often pay attention to privacy settings as the pay attention group, those who would not or rarely pay attention as do not pay attention group and those who moderately pay attention as the undecided group. To understand how respondents differed in terms of reading privacy agreements and notices (RPA) compared to paying attention to privacy settings (PSUP), we performed a dependent t-test. Respondents reported that they paid more attention to privacy settings (M=3.80, SE=.24) than to reading privacy agreements (M=2.43, SE=.24), t(29)=-4.48, p<.001. The calculated perceived effect size, r was .62,

which is above the .5 threshold for a large effect28. The results of the t-test and the effect size supported hypothesis H8. This can also be inferred by comparing Fig. 2-a and Fig. 2-b as there is a significant difference between the size of reader group (23%) and pay attention group (66%). Thus we can infer that PHR users perceived using privacy settings to be more effective than reading privacy agreements and notices for privacy decision making.

■ non-reader ■ do not pay attention ■ do not change default seffings

Fig. 2. Mismatch between perception and behaviour of using privacy settings: (a) behaviour of reading privacy agreements, (b) perception of paying attention to privacy settings, (c) behaviour of changing default privacy settings

To investigate the consistency of users self-reported perceived behaviour with actual behaviour in using privacy settings and to test hypotheses H9 and H10, we asked participants how often they changed the default privacy settings offered by the social networking websites they are members of. 11 out of 28 respondents answered almost never, 6 out of 28 rarely, 8 out of 28 occasionally, 1 out of 28 often, and 2 out of 28 almost always. The results are shown in Fig. 2-c. We grouped those who would often or almost often change the default privacy settings as the change group (29%), those who would never or rarely change the default as do not change group (60%), and those who occasionally change as the undecided group (29%). We performed another dependent t-test to compare mean values of participants willingness to read privacy agreements (RPA-Fig. 2-a) with their willingness to change the default privacy settings of their social networking websites (PSUB-Fig. 2-c). Interestingly, as a result on average, participant behaviour in changing the default privacy settings (PSUB) (M=2.18, SE=.23) was not significantly different from reading privacy agreements (RPA) (M=2.43, SE=.24), t(27)=-.96, NS. Therefore, hypothesis H9 was rejected; i.e. given the size of the sample and the random outcomes, there was not enough evidence to conclude that PHR users' behaviour in changing privacy settings is not consistent with the self-reported pattern of reading privacy agreements. This can be observed by comparing the reader portion of Fig. 2-a and change portion of Fig. 2-c.

Comparing PSUP (the perception of using privacy settings) and PSUB (actual behaviour of using privacy settings) also revealed that on average, respondents perceived themselves to pay significantly more attention to changing default privacy settings (M=3.80, SE=.26) than they reported actually changing those default privacy settings (M=2.18, SE=.23), t(27)=6.06, p<.001, r=.76. As a result of this test hypothesis H10 was supported, indicating that respondents' self-reported actual behaviour in changing the default privacy settings was in fact inconsistent with their self-reported perception of using privacy settings. Respondents perceived themselves to be more vigilant towards changing privacy settings than was warranted by their self-reported behaviour with respect to social networking default privacy settings.

We also studied the effects of personality differences (usage of social networking website as the indicator) and demographic differences (gender, age, and education) on RPA, PSUP, and PSUB. The results indicated no significant differences across categories of personality differences, gender, age and education.

5. Discussion and Implications

The regression results indicate that PHR users' sensitivity to the type of PHR data and services, as well as the coverage of privacy protection Acts in the jurisdiction that the users live, are factors moderating the users privacy concerns. These factors mirror the factors previously noted as influencing the privacy concerns of general online users11,29,17,12. We were interested in understanding PHR users' perceptions and behaviour when making privacy decisions compared to the attitudes of general Internet users. This issue had been previously raised in the Privacy Leadership Initiative (PLI) report conducted by Harris Interactive Inc. in 200130 and in the Milne et al. study in 200415. Our results, as well as those of other researchers showed that a large portion of respondents, consistently (more than 50%) decided not to read privacy agreements, as a privacy decision-making strategy. This pattern has not changed over a decade. In our study while 28 out of 33 respondents (80%) indicated they were concerned about the

usage of their data, they nevertheless reported not reading privacy agreements to make privacy decisions. Samavi and Topaloglou 31 illustrated that in order to understand user privacy concerns and develop systems that address these concerns, the system requirement models should be able to capture intentionality, reasons and motivations behind behaviour of the system users.The implication of the results reported in this paper, particularly for PHR application architects and developers, is that relying on privacy agreements as the only medium to communicate data practices and privacy risks may be insufficient to assure that PHR users make informed privacy decisions. Thus there is a need to implement alternative privacy decision-making strategies.

Another interesting finding of our study was that the self-reported perception of using privacy settings as an alternative to privacy notices and agreements diverged from the actual behaviour of changing privacy settings. There is an extensive body of literature in behavioural economy and psychology32 that suggests that there is a deviation from rationality when people decide about longer term future risks. Acquisti et al.19 showed that this deviation is particularly relevant to privacy decision-making. It seems that PHR users, similar to general Internet users, perceive themselves to be privacy concerned, and report that they would pay attention to privacy settings, but do not in fact do so. The distinction between perception and behaviour is particularly crucial in the PHR context since a study conducted by Li et al. 33 has found perceived privacy control and trust (as opposed to actual behaviour) is one of the major factors determining intention to adopt the PHR, overriding the effect of potential privacy risks. Thus, there is a need to not only transform communication of privacy agreements but also to improve privacy settings so that the meaning of the features and the consequences of sharing is better communicated with users.

The open-ended responses support our conclusions above. Users would like a more simplified model of privacy settings as can be seen in the following quote: "Only useful if the choices [in privacy settings] are few and understandable. Not like Facebook's options!" Users would also appreciate informative intervention by privacy experts or other trustworthy entities, such as the privacy commissioners, in the privacy decision-making process. Illustrative comments from our respondents were, "I'd rather just have a IPC [information and privacy commissioner] certify button, or something like that, to show that they [application providers and PHR platforms] adhere to the law [instead of using privacy settings]." Insights about the type of solutions that application designers and architects can pursue to accommodate users needs were also gained from the survey results. 21 out of 29 (72%) respondents indicated that they may consider reading privacy agreements and notices if they are in summarized format or if the length is less than a page. 12 out of 29 (41%) respondents stated that likelihood of reading privacy agreements might increase if visual cues or graphics are included. Finally, 12 out of 29 (41%) respondents indicated that additional tips provided by privacy experts would make them more likely to read privacy agreements.

Study Limitations. This study focused on a relatively small sample of people who were likely to have strong views on privacy. Respondents of the survey came from a community of people-centred healthcare advocates in Ontario, Canada. While this provided a strongly focused sample it also meant that even with a response rate around 20% of that community, our sample size was only around 30 for most questions in our survey. Due to the nature of the community being sampled, respondents in our survey were highly educated, had relatively higher income and were from older age groups, limiting the generalizability of our results to the general population, although a focus on older people with higher education, and higher income seems reasonable given that they are relatively more concerned about their privacy34,35. Another limitation of this study is using survey as the study's instrument to measure privacy behaviour and perceptions. To maintain accuracy of the self-reported behaviour, we asked indirect questions and/or questions about familiar environments from which participants can more accurately report their behaviour (i.e. social networking websites). However, the accuracy could be improved if the study is re-designed as a lab experiment with direct observation of participants' privacy behaviour.

6. Conclusions

We draw two main conclusions from the results reported here. First, PHR application architects and developers cannot rely on privacy agreements as the only medium to communicate data protection practices and privacy risks to PHR users. Second, the growing number of privacy settings, as we observe in popular social networking platforms, may not be as useful as they seem since they are not being used by most people, even by those people who are concerned about privacy. Thus there is a crucial need for development of alternative privacy preserving options. Based on the responses to open-ended questions in our survey, respondents consistently saw value in changing the privacy decision making process to include involvement from privacy experts. Further research is needed on how to encode privacy expert knowledge so that it can effectively facilitate decisions concerning personal privacy.

Acknowledgments

We extend our sincere thanks to Dr. Vaughan Glover, CEO of the Canadian Association for People-Centred Health (CAPCH) and all members of CAPCH for their support of the study. Financial supports from the NSERC Canada and Privacy Awards from IBM and the Information and Privacy Commissioner of Ontario are gratefully acknowledged.

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