Privacy in Electronic Health Record Systems Consumer s perspective

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1 Privacy in Electronic Health Record Systems Consumer s perspective Supervisor: Oliver Popov Submitted By: Jibin Jacob Vivek Agrawal Group 083 Department of Computer and Systems Sciences Report for FMVEK/IC2003

2 Abstract With the advancements in the fields of medical science and the Information and Communication Technology (ICT), many healthcare providers started to use electronic healthcare systems to manage and administrate the healthcare data. As with the widespread use of EHR services, there aroused the need to store and share sensitive patient data among stakeholders of the healthcare providers. As the systems dealt with the sensitive treatment data of the individuals, the security and privacy of the data needs to be given the top priority. In this report we tried to analyze the various privacy issues and challenges that are out there while dealing with electronic healthcare systems. The main goal of this research was to find out whether the public is aware of the privacy challenges in EHR systems and whether they are held back from using EHR systems because of the privacy concerns. Keywords ehealth, electronic health records (EHR), Privacy Stockholm University Department of Computer and Systems Sciences Kista Telephone:

3 Table of Contents 1 Introduction Background Research Problem Purpose of Research Goals and Target Audience Limitations Research Methodology Research Question Literature Review Primary Literature Secondary Literature Survey Privacy Challenges in EHR Human Factors Integrity and Confidentiality Protection Law and Ethics Results and Findings Conclusion and Discussion Conclusions Discussions Suggestions for future research Literature references Appendix A Questionnarie

4 1 Introduction E-Health is the combined use of electronic communication and information technology in the health sector -WHO Health is a major concern for everyone in this world. The implementation of Information and Communication Technologies in the medical field has modified the present definition of health care. It suggested the solution that can benefit both patient as well as health care professionals. EHR 1 provides solutions in a wide spectrum and it includes various health care products, systems and services. It includes tools for health professionals as well as for patients and citizens. Various services or systems that are covered under EHR are; health information networks, electronic health records, telemedicine services, Consumer health informatics, Healthcare Information Systems, Health knowledge management. Patient s share their health information with their physician in order to improve their health treatment. Patient s Information is stored in Electronic Health Record. It has been observed from a survey conducted in Sweden that 95% of all documentation in primary care is made in electronic healthcare records [1]. Almost 55% of the Pharmaceutical prescriptions are issued digitally in Sweden and transmitted directly to the pharmacy store [1]. The challenging issue which is associated with the EHR system is the protection of Medical Records. Since the data is transmitted over the network from one place to another so it is suffering from the major security concern. An electronic medical record (EMR) stores personal data which includes medical test results, prescription, hospitalizations, etc. Privacy in the EHR system can be classified into two categories; Content oriented privacy and contextual privacy [2]. So EHR system can be termed as a secure system if it can deal with both these aspects of privacy. Content oriented privacy indicates the capability or authority of the health care stakeholders in disclosing the patients personal information to other parties (marketing, insurance) whereas contextual privacy indicates the ability of a malicious entity to guess the disease of a patient correctly by identifying the field/domain of his physician. 1.1 Background In earlier days physicians used to use paper charts for recording the encounters with the patient. Details about medications, lab tests, X-rays etc the patient has taken, needs to be recorded in the chart for future reference. As the medical care became more and 1 Electronic Health Records 2

5 more complex, it became tedious for physicians to maintain a good patient record on these paper charts. They needed new technologies to help them to cope up with the increasing needs. With the advancement in the information and communication technologies, the idea of storing the patient records electronically came in around 1960 s, when Dr. Lawrence Weed introduced the concept of Electronic Health Record. Weed s innovation allowed a third party to verify the diagnosis to avoid any errors. In 1972, Regenstreif Institute developed first medical record system which combined both inpatient and outpatient data recording[3]. Electronic Health Records (EHR) Systems stores the entire health and medical history of a patient in a computerized, electronic format. The record includes the details about patient demographics, progress notes, medications, past medical history, vital signs, laboratory data, immunizations and radiology reports. Keeping these vast records in this organized manner makes it more efficient to retrieve and maintain, when compared to the paper charts [4]. As the medical care and the information technology became more and more complex, it became necessary to share the patient records among the various medical departments like clinical, nursing, laboratory, radiology, hospital administration etc in order to maintain a proper medical record about the patient. When the health records including sensitive data about the patient were shared electronically among the different departments, privacy and security problems became a major challenge to the EHR systems. The recent studies [5] on security and privacy concerns in EHR systems shows that, there is increasing number of threats resulting from the distributed and decentralized implementations of EHR Systems, and also the use of communication over open and insecure internet. Unauthorized accesses, Denial of service are to name a few. Lack of standardization among these systems made it very difficult for the system administrators to implement a secure system. 1.2 Research Problem The main problem associated with an EHR system is the privacy, security and confidentiality of Electronic Health data (EHD). EHD stores private and sensitive data of the patient and data of EHD is used by physicians, nursing, laboratory, and pharmacy. The publication of personal sensitive data can seriously compromise the patient privacy. Due to this reason many individual does not go for EHR treatment since they are afraid of the loss of their Health record including information about their illness or disability. In a survey conducted in Canada, it has been found out that 11-13% of Canadians have held back information from a health provider because they were afraid of the privacy of their data [6]. In a survey conducted in America, 77% of the population is concerned about their medical information being used for marketing purposes [7]. We are trying to figure out the people s concern about the privacy of their health care record at Stockholm. We will examine the opinion of public regarding the privacy of their health information and accessing EHR service. 3

6 1.3 Purpose of Research The purpose of conducting this research is to examine the present scenario of the Health care system in Sweden. Research result will be helpful for patient, health care professionals and health care organizations. How the present scenario related to the privacy and the confidentiality of the Health care data is affecting the decision of accessing the EHR Service. This survey will help to reveal the importance of Security in this field. 1.4 Goals and Target Audience The findings of this survey will not only be helpful for the Health care service of Sweden but it is also helpful for rest of the world. Based on the result produced from this survey, other countries can analyze the present level of patient s concern about EHR privacy. Our audience can be anyone who is related to healthcare services; healthcare professionals, practitioners, nurses, administrators, patients. 1.5 Limitations Because of the time constraint, the population that we are targeting for this survey includes only undergraduates, graduates, post graduates and post doctoral students (age group 18-35) in KTH (both Main Campus and Kista Campus). As we are conducted this survey on limited range of age group, we could not include the opinion of elder citizens. In future, this survey could be extended to the senior citizens also to get a better response. 4

7 2 Research Methodology In this section, we presented the description of the research methodology conducted in this paper. We selected inductive reasoning method for our research work. We tried to draw a generalized conclusion from a finite collection of specific observations. 2.1 Research Question The research questions which are addressed in this report are: 1. To what extent, privacy of health care records affects the individual s decision of accessing EHR service? 2. Are there certain groups of people for whom the privacy is a major issue while accessing the EHR service? 2.2 Literature Review Mentioned below are the literatures that helped us to choose and narrow down to a specific research topic Primary Literature Electronic-Healthcare Information Security by Kudakwashe Dube, Fredrick Mtenzi, Charles A Shoniregun [8]. This book explores the security and privacy challenges that need to be considered while developing an electronic health record system. Also, this book evaluates the various factors that affect privacy and security of the patient data in an e-health system. This book gave us an excellent insight about a variety of privacy and security issues related to EHR. It really helped us in formulating the research problem. E-health care information systems: an introduction for students and professionals by Joseph K. H. Tan [9]. We selected this book as it contained detailed overview of an e-health system. This book analyses the components of an e-health systems, discusses the evolution of E-health paradigm and evaluates the scope of e-health strategies and impacts. This book provides information about the e-health care technology management and the security issues related to e-health systems. This book is a handy guide for the researchers in the e-health data privacy area. The Craft of Research by Wayne Booth, Gregory Colomb and Joseph Williams [10]. This book was the guiding light on how actually we should do a scientific research. This book helped us to structuring and organizing the research work and the report writing. 5

8 Swedish Strategy for ehealth. Safe and accessible information in health and social care. Status report 2009, a report by the Ministry of Health and Social Affairs, Sweden [11]. This report gave us a very good idea of how the e-health systems work in Sweden. Also this report helped us to understand the Swedish government s laws and regulations to uphold the patient data privacy in e-health systems Secondary Literature Also as part of our literature review, we studied some of the previous reports published on similar research problem. Ensuring the Privacy and Confidentiality of Electronic Health Records Report by Nicolas P. Terry and Leslie P. Francis [12]. This report argued that, in order for an EHR system to be successful, the system needs to receive the acceptance of the physicians and patients. According to the report, the EHR system should address and protect the concerns about the privacy and confidentiality of the patient data. Building Public Trust for Electronic Health Records Report by Mike Smit, Mike McAllister and Jacob Slonim [13]. This report is a summary of an opinion poll conducted in United States to find out whether the people are held back from using the EHR systems because of the security and privacy concerns. 2.3 Survey Based on the information gathered from the literature review and the previous reports, we prepared a questionnaire. The questionnaire contained 12 questions and the questions were designed and structured to get an idea about the security and privacy concerns of the user while using an EHR system. The complete set of the questionnaire can be found in the Appendix 7.1. We used Google forms to create the survey. The data was collected and stored to a Google spreadsheet when the user submits the survey [14]. Once the survey was created, the survey link was distributed by among the students in the KTH University. Students in KTH University Sweden were a good population to conduct this survey on, as most of them will be using the healthcare in Sweden while studying. The survey was kept completely anonymous and no personal information was collected. Keeping anonymity was important as we were dealing with the privacy concerns, and also we wanted to get the honest opinion of the user. The survey was distributed on 13 December 2010 and we got 127 responses. We have considered all the responses that we got till January 3 rd responses was a fair amount to conduct the statistical analysis on the data captured. 6

9 3 Privacy Challenges in EHR The security of the Healthcare information mainly deals with the protection of the privacy and confidentiality of the patient s personal Medical records that are accessed through the EHR services. Though the technologies have been advanced in the modern world but it has not been omitted the risk related to the privacy concern. The rate of privacy and confidentiality breaches are increasing day by day and these breaches directly attacking the trust in EHR information Management [8]. 3.1 Human Factors It is a common problem that Healthcare professionals are unwilling to the Information and Communication technologies for Healthcare services. According to the survey [15], 76% of specialist physicians consider that the human factors is the most important for them and 53% of them are not interested for the use of Information and communication Technologies for Healthcare services. EHR system will be considered as a successful approach if it meets the criteria of user and patient friendly systems. EHR system must be designed keeping in mind the relation of health professionals and patients. System may be very complex from the back end but the front end should be simple enough so that patient/user can handle it properly. EHR system can suffer from privacy concern due to human factors if the user is not a computer literate or he/she is not mentally sound to understand security issues [16]. According to experts, Solutions need to enable medical and healthcare staff to spend more, not less time with their patients. Users need to benefit from the system, not feel burdened by it. [17]. 3.2 Integrity and Confidentiality Protection As more and more Healthcare organization is shifting towards the EHR services and all the services are being digitized, the security breaches are creating a major issue in the Healthcare Information Management. These security breaches are performed by compromising the confidentiality or Integrity of the Healthcare Records. Confidentiality helps to obscure the sensitive data from unauthorized individuals and Integrity confirms the accuracy and consistency of Medical records. As the health records are transmitted through a communication channel, and this channel is shared with the other internet services. Modification or eavesdropping of data can breach the privacy of whole system severely [18]. Data must be created and inserted into the network nodes only by the authentic entities but it is a challenging task to keep track of this activity over the network. In a survey conducted in Canada (2000), it has been found that almost 17% of respondent felt that their information was not kept confidential. In our survey we found that 47% of the populations are concerned about the identity theft while accessing EHR system. 7

10 3.3 Law and Ethics It is sometimes mandated by the government/law to disclose the medical records to parties other than Healthcare stakeholders. These parties may be Business organization or Research organization. The distributed of health data to public officials raises a major question on the maintenance and processing of the data. From our survey, we found that 29.9% of the respondents are not willing to share their personal information to help government agencies who are studying on the disease outbreaks and research ways to improve the quality of health care. Companies and organizations (under healthcare sector) have been noticed to allow prescription data to be collected by data mining companies. Companies and organizations within the healthcare sector, that control e-healthcare information databases, have been seen to make ethically questionable business decisions. For instance, pharmaceutical companies and medical doctors allow prescription data to be collected by data mining companies who then mine it and sell details of the information retrieved [19]. In our survey, 28.3% of the respondents said that they received promotional advertisements on health care products from marketing agencies. 8

11 4 Results and Findings We used a standard statistical analysis tool (SPSS licensed under KTH) to analyze our survey data [20]. We got the total responses of 127 students which are distributed as 52 and 75 from Female and male respectively. 80% of the respondents belong to ICT school of KTH. Survey result shows that 83% of the respondent accesses EHR services less frequently. Irrespective of the frequency of accessing the EHR service, we encouraged the respondent to fill the whole survey because we wanted to get their opinion about the privacy concern while accessing EHR service. With the help of SPSS tool, we generated the cross tabulation report on the two of the survey questions (table 1). Are you concerned about identity theft or fraud related to ehealth? * Did you ever held back information from a health provider because you were afraid of who would see this information and for what it would be used? Crosstabulation Did you ever held back information from a health provider because you were afraid of who would see this information and for what it would be used? t Sure Are you concerned about identity theft or fraud related to ehealth? 57.6% 12.1% 30.3% t Sure 51.5% 21.2% 27.3% 21.3% 8.2% 70.5% Table 1: Cross tabulation result of survey question (vii) and question (x) using SPSS tool. From the report, it can be observed that 70.5% of the respondents, who are concerned about identity theft or fraud related to EHR services, held back their medical information from a health provider. This result clearly indicated that the concern about privacy affects the decision of an individual to access EHR service. This helped us to answer our first research question. In case of second research question we found from our survey results that, females are more concerned about the privacy. 61.5% of the female respondents said that they are concerned about the identity theft and fraud related to EHR in comparison to 38.7% of male respondents. 2 SPSS: Statistical Package for the Social Sciences. It is also known as PASW (Predictive Analytics Software) Statistics. 9

12 Gender* Are you concerned about identity theft or fraud related to ehealth? crosstabulation Are you concerned about identity theft or fraud related to ehealth? t Sure Female 19.2% 19.2% 61.5% Gender Male 30.7% 30.7% 38.7% Table 2: Cross tabulation result of survey question (i) and question (vii) using SPSS tool. Also from the survey we observed the following. 81.9% of the respondents are in favor of accessing all of their medical records to verify their treatment data and 11.3% of the respondents are not sure about this. This shows that the individuals are more concerned about the correctness of the data stored in the health records. The healthcare systems should provide the patients the access to review their own treatment records. 88.2% of the respondents are interested to review that who has access to their personal health information (See Figure 1). It is clear from the result that people doesn t want to disclose their private data to anybody without their consent. It should be included in the electronic healthcare ethics to inform the patient when somebody access patient s medical record. And also the patient should be given the authority to choose who all can view his treatment records. 6% 6% yes t sure 88% Figure 1: Response distribution for the interest to review that who has access to the personal information. From the survey result we observed that 45.7% of the respondents are willing to share their healthcare information to help government agencies to perform research on disease outbreaks where as 29.9% are not interested to share the same (See Figure 2). 10

13 30% 46% t Sure 24% Figure 2: Response distribution for the willingness to share personal Information. We found a strong relation between the privacy concern of people and their interest to share their personal healthcare information. People who are more concerned about their privacy are not willing to share their personal information. From Table 3, we can see that 47.5% of the respondents are concerned with the EHR privacy and that s why they are not interested to share their any sensitive healthcare records. On the other hand, 54.5% of the respondents are not so concerned about the privacy issues and they are ready to share their information. Are you concerned about identity theft or fraud related to ehealth? * Are you willing to share your personal medical information to help government agencies to perform research on the potential disease outbreaks? Crosstabulation Are you willing to share your personal medical information to help government agencies to perform research on the potential disease outbreaks? t Sure Are you concerned about identity theft or fraud related to ehealth? 21.2% 24.2% 54.5% t Sure 6.1% 30.3% 63.6% 47.5% 21.3% 31.1% Total 29.9% 24.4% 45.7% Table 3: Cross tabulation result of survey question (vii) and question (ix) using SPSS tool. 11

14 5 Conclusion and Discussion 5.1 Conclusions Healthcare system is taking the new form with the advancement in the Information and Communication Technologies and it is trying to embrace all the possible way of solving the present problems associated with the system. The transmission and storing of sensitive medical data in the digital form across the network made the system prone to the security related issues. EHR constitutes the lifelong storing of patient s medical data, so apart from the doctors and medical professional there are many other entities who are interested in fetching this data. Insurance companies and healthcare products marketing agencies are the prime groups that are interested in getting the medical data. This fact has been motivated from our survey also, 28.3% of the respondents accepted that they received the advertisement from the marketing agencies. In this paper we stated the importance of privacy in EHR system. Privacy can be comprised in many ways while accessing EHR services. We stated that privacy can be breached by the outsiders (eavesdropping) as well as insiders (disclosure), so the security and rules must be applied both the front and back end of the system. Previous statistics and our survey result showed that people are concerned about the identity theft and fraud while accessing any EHR services. This clearly states that their concern affects their decision of accessing EHR services. Privacy and security issues are acting as a major roadblock and it is necessary to overcome this obstacle in order to accept it globally. 5.2 Discussions The main components of present EHR system is obviously the IT components, it constitutes hardware, software and communication channel. Privacy can be breached by breaking the security of any of these entities. It has been observed that most of the software and hardware are not accepted on the basis of providing high assurance level rather it is produced and accepted because of the marketing and promotion conducted by the software s vendors. This can be taken care by the government by applying standard policies and rules on it. From our survey, we observed that 78.7% of the respondents think that government should regulate the agencies that can access the personal healthcare data. Government should introduce minimum baseline requirement to collect, process and distribute data among the different entities related to healthcare service. Government can encourage different healthcare organization to adopt EHR services by providing by improving the incentives of the employers. Government can also encourage adopting EHR services through education and awareness program [21]. This will help the healthcare stakeholders to understand the implementation and importance of EHR. Public must be educated to understand the benefit of EHR in terms of cost and treatment precision. This awareness programs will be helpful for the public 12

15 to understand the privacy and security related issues related to EHR and the proper awareness which is required to mitigate it [21]. 5.3 Suggestions for future research This report is confined towards the privacy concern about the EHR services among the people at Stockholm. But due to the time constraint the survey is restricted to the few groups from the KTH. The future research can consider the large group of people (age group above 35) and from different regions of Stockholm. From the past few surveys and literature review, we found that large proportion of the populations is not aware of any government rules and standards for EHR in their respective countries. So it will be an interesting part to include in the future research because the results of the finding can help the government to organize any special awareness program for the public and encouraging them to adopt this service. 13

16 6 Literature references [1] Daniel Forslund. (2006, v.) [2] Rongxing Lu,Xuemin (Sherman) Shen Xiaodong Lin, "SAGE: A Strong Privacy- Preserving Scheme Against Global Eavesdropping for ehealth Systems," vol. 27, no. 4, [3] NASBHC. (2009, Jan.) [Online]. CEE165C701D9%7D/TA_HIT_history%20of%20EMR.pdf [4] Trisha Torrey. (2008, Feb.) About.com. [Online]. [5] G. Pangalos C. Ilioudis. (2005, Jan.) aetos.it.teithe.gr. [Online]. [6] M., McAllister, M., and Slonim, J. Smit, "Electronic Health Records: Public Opinion and Practicalities,", Lake Garda, Italy, [7] (2006, Dec.) [Online]. Health.html [8] Kudakwashe Dube,Fredrick Mtenzi Charles A. Shoniregun, Electronic Healthcare Information Security. New York: Springer Science+Business Media, LLC 2010, [9] Joseph Tan, E-HEALTH CARE INFORMATION SYSTEMS - An Introduction for Students and Professionals. San Francisco: Jossey-Bass, [10] Gregory G Colomb, Joseph M Williams Wayne C Booth, The Craft of Research - Third Edition. Chicago: The University of Chicago Press, [11] Göran Hägglund, "Swedish Strategy for ehealth - Safe and accessible information in health and social care," Sweden, [12] Leslie P. Francis Nicolas P. Terry, "ENSURING THE PRIVACY AND CONFIDENTIALITY OF ELECTRONIC HEALTH RECORDS,", October 12, [13] M., McAllister, M., and Slonim, J Smit, "Building Public Trust for Electronic Health Records,", St Andrews, NB, [14] (2010) docs.google. [Online]. [15] Mounim Belalia, and Rachid Oumlil Az-Eddine Bennani, "As a human factor, the attitude of healthcare practitioners is the primary step for the e-health: First outcome of an ongoing study in Morocco," vol. 3, [16] Francoise Petersen, "Security and personalized ehealth systems," Sophia Antipolis, France, [17] On behalf of Federal Minsitry for Economic cooperation and development, "e-health for Development;The promise and pracitice,", Berlin, Germany, [18] Elaine Lawrence, Martin Fischer, Yen Yang Lim Frank Kargl, "Security,Privacy and Legal Issues in Pervasive ehealth Monitoring Systems,",

17 [19] Robert M. Cook, "Rx data mining: Improving health care or invading," Sep 30, [Online] pdf [20] (2007, July) kth.se. [Online]. [21] Accenture, "Electronic Health Records Survey,"

18 7 Appendix A 7.1 Questionnarie i. Gender * Male Female ii. Select your age group * >35 iii. Do you belong to school of Information and communication Technology? * iv. How frequently do you use ehealth services? Once in a week Once in a month Once in an year Never v. Do you think that it is important for your doctor to be able to access all of your medical records in order to provide the best care? t Sure vi. vii. viii. Is it important for you to be able to access all of your medical records to verify your treatment data? t Sure Are you concerned about identity theft or fraud related to ehealth? t Sure Is it important for individuals to be able to review who has had access to their personal health information? 16

19 t Sure ix. Are you willing to your personal medical information to help government agencies to perform research on the potential disease outbreaks? t Sure x. Did you ever held back information from a health provider because you were afraid of who would see this information and for what it would be used? t Sure xi. xii. Have you received any promotional advertisements on health care products from marketing agencies? t Sure Do you think that government should regulate the agencies who access your personal healthcare data? Eg: Private Health Insurance companies, health products marketing agencies t Sure 17

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