Ethical Concerns with Interoperable Electronic Health Records
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This article discusses the ethical concerns related to interoperable electronic health records (iEHRs) and potential solutions. It covers topics such as patient access, privacy, and the impact on healthcare delivery. The research is based on studies conducted in Canada, USA, England, and Switzerland.
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Running Head: ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)1 Ethical Concerns with interoperable Electronic Health Records (iEHR) By: Haida Mahmoud CD-ED HIM 209 Instructor: Ms. Sandra Cotton March 2019
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ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)2 Table of Contents INTRODUCTION...........................................................................................................................3 BACKGROUND.............................................................................................................................3 METHODOLOGY..........................................................................................................................5 Key terms and definitions:...........................................................................................................6 LIMITATIONS................................................................................................................................8 FINDINGS.......................................................................................................................................8 Ethical Concerns in iEHRs..........................................................................................................8 Potential Solutions to the Ethical concerns in iEHR..................................................................11 CONCLUSION..............................................................................................................................11 REFERENCES..............................................................................................................................13 BIBLIOGRAPHY..........................................................................................................................13 2|P a g e
ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)3 Ethical Concerns with Interoperable Electronic Health Records INTRODUCTION Electronic Health Record is a record that contains the medical records of different patients from different sources in a digital format. The records contain information such the physical examinations, diagnosis, and treatment. Hospitals have started implementing EHR because of its advantages. Some of its advantages include improved care quality, reduced costs of maintaining paper-based systems, and improved access to health care information An EHR is challenged ethically when patient details concerning their health are revealed without their consent. Patient awareness of this issue may make them conceal some of their sensitive information which leads to a compromised treatment. Therefore, Policymakers and other health personnel must come up with policies which regulate access to electronic health care records. BACKGROUND To be able to ethically utilize the maximum potential benefits of interoperable Electronic Health Records (iEHR), and to protect its privacy and confidentiality, the user should know what the record contains, how the contents are collected and by whom, and how are they electronically retrieved and transferred. Health Records (HR) are quite significantly different from Medical Records (MR), just as the word medical is different from the word health. Yet, they can be misused interchangeably. The major difference is that MR is created, maintained, stored and destroyed by physicians in their office. They contain information about the patient’s treatments and interventions in that office, consultation notes, or test results requested by that clinician.MR can be accessed only by the 3|P a g e
ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)4 physician who is directly involved in the care of this patient. The physician identifies who if anyone can view the information, including the patient about whom the information is collected. True iEHRs are more comprehensive and broader; they are more about the total health of this patient. They contain information from all clinicians, not just physicians, which are involved in the care of this patient at any point in time. They are not just used by the facility that collected the data, they are used by more than one healthcare organization. In addition to physicians, other organizations that could collect and share health information are labs, specialists, nursing homes, medical imaging facilities, emergency departments, pharmacies, or even schools. Therefore, the iEHR gives a complete picture of the patient’s health history over time.This detail culled from many sources helps the authorized care provider to give the most suitable health care when and where it is needed. iEHRs can tremendously improve the care of the patient by minimizing medical errors. The iEHR is comprehensive and contains all the data related to the patient’s previous interventions, current diagnosis, medication history, and possible allergies.With the clinicians’ ability to access the iEHR, they can identify potential conflicts or contraindications of any treatment, or even prevent adverse drug reaction. An iEHR increases the speed of providing necessary care, due to the quick access to the patient’s record. There is no need to wait for information from other sources or to wade through volumes of data, as it is significantly faster to transfer and retrieve data through the iEHR than paper charts. The necessary information is available immediately, and therefore the clinician can make decisions on care with speed. Another benefit of the iEHR is cost efficiency. iEHR will eliminate the need for any record storage freeing up the storage spaces which were initially used under the paper system. Also, there will be no need for a person to manage thousands of files previously used in the paper 4|P a g e
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ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)5 system. In addition to saving in storage spaces, EHR is cost-effective as it could prevent duplicate tests. By accessing the patient’s health record, the physician can retrieve any previous tests, labs, or imaging results, even if it was requested by another physician from a different health institute. As all technology innovations are a double-edged sword, they are a tool of convenience and a possible threat; EHR facilitates and improves the delivery of health care, while it could create conflicts among various ethical principles. By their very nature, iEHRs contain sensitive and personal information; they should be kept private and confidential.Those with access to the data and information contained within should maintain the confidential nature and be governed by privacy laws, regulations, and health policies without compromising the humanistic elements. Provincial,territorialandfederalgovernmentsshareresponsibilityinthecreation, implementation, and enforcement of policies, laws, and standards regulating the use of iEHRs. Despite this, there are still some gray areas regarding the use of these records. One of the major issues is that of access to the information by the patient.While there is an agreement that patients should be able to access their information, the right of access is not absolute. Patients accessing the results of their report before discussing them with their physician could result in misinterpretation of these results. Other issues include the impact of documentation on the patient-physician relationship, or the implementation and use of the EHR impacting the face-to- face time in examining the patient, and more.This paper identifies and discusses the research related to some of these ethical considerations while handling EHR, and their potential solutions. Paper Records vs iEHR For every patient who have had a doctor appointment and found that doctor detailing health medical records on a piece of paper can testify on how inconveniencing 5|P a g e
ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)6 that approach is because the doctor does not grasp all the concepts as he scribbles to write. This is in comparison to a different case where the doctor types on a computer. Although the two scenarios involve medical records, there is a big difference. Paper records requires additional personnel to support and handle paper files while an iEHR will require less personnel, time and no physical storage space. Although some initial costs will be experienced as the iEHR is implemented, the costs of medical record keeping will reduce significantly over time. Also, there is no privacy and protection of patient’s medical information under paper based records. This is because anybody can access the medical records and read them. However, this is not the case with iEHR where there is access control. Access control has been implemented in the system to limit access to patient’s medical information. For instance, one patient will not be able to access medical records for another patient because he or she does not have the right to access. A doctor will be able to access the same information because he or she has the right of access. This will improve the confidence of patients when disclosing their medical records. METHODOLOGY The electronic health record is just like any product of technology, it comes with unavoidable side effects. This paper covers the ethical concerns as one of these side effects of EHR. Secondary research is the method used in this paper. Data were extracted and analyzed from previous research and studies on the topic of ethical considerations in iEHRs. The research has been culled from studies conducted in Canada, USA, England, and Switzerland. USA 6|P a g e
ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)7 research was used because America is well known as an advanced industrialized country that has invested a lot of money into iEHRs; England has the closest healthcare system to the Canadian Medicare, and Switzerland has the highest satisfaction rate from its citizens regarding the healthcare system. Key terms and definitions: EHR: Health information about one person who is available from multiple sources spanning time, that is collected, saved, and which can be shared electronically. Ethical: Morally approved Pathological Report: a medical record that contains details about the diagnosis based on a detailed examination of a specific tissue. CHIMA: CanadianHealthInformationManagementAssociation,thecertifyingbody and national association that represents leadership and excellence in health information management (echima.ca). CanadaHealthInfoway:independent,federallyfunded,not-for-profitorganizationthatis responsible for the implementation of iEHRS across Canada. Security: protecting health records from unauthorized access. Secondary data: data that has been collected by someone other than the current user. De-identified Dataset: data that has been stripped of all elements that might alone or in combination, identify a person Re-identified Dataset: anonymous data that has been matched with public information to identify the individual 7|P a g e
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ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)8 Therewerenumerous/hundredsofarticles/citationsfoundregardingEHRethical concerns. After filtering the search results to articles from the last 10 years, written in English, and about specific countries that are in some way relevant to the Canadian Health System, 10 articles were identified. Only credible research was used in this paper. These research papers were posted on popular sites, some governmental, with identified authors and peer-reviewed. American based sites: -AMA Journal of Ethics: published by the American Medical Association. Its articles are peer- reviewed, and the board members are recognized leaders in Philosophy and Ethics and Ethical policies. -NCBI.com: The National Centre for Biotechnology Information is a comprehensive database that is a source of accurate, science-based information. -Sciencedirect.com: contains accredited scholarly journals. Canadian based sites: -eCHIMA.com: The Canadian Health Information Association is the professional association of certified Health Information Management HIM professionals in Canada. -Infoway-inforoute.ca: non-profit Canadian organization that is responsible for the development and adoption of the EHR. European based sites: -Theroyalsocietypublishing.org: publishes peer-reviewed articles of a healthcare system that is somewhat similar to the Canadian system. 8|P a g e
ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)9 -Smw.ch: The Swiss Medical Weekly journal has peer-reviewed articles that are published by the Swiss medical publisher. LIMITATIONS Articles selected were published in countries that have a health care system like the Canadian one (England); countries that have relatively high success rate (Switzerland); or a country with an advanced medical field (USA). Only peer-reviewed articles were used/analyzed in this paper. The language was another limitation as in Canada and Switzerland many research studies were written in French, the English ones are what the ones which were used in this paper. Also, not all the articles were free to access; seven of the articles required me to have a membership or a fee, so these articles were not used. FINDINGS Ethical Concerns in iEHRs oHow and what information a patient can access in his or her portal: There exists no directive regarding how and when a patient should obtain access his or her health details in some of the critical health examinations like HIV testing. Research shows that about 7% of patients found the information in the portal disturbing and confusing. According to experts the period of time before giving patients access to information via a portal varies. This is because some of the health information might be disturbing to the victim like HIV status and cancer results. Things like radiology and cytology tend to take more time. A test like HIV may take up to 28 days to allow for follow up and appointments. This is often in the case of positive patients. Attempts have been made to allow automated delays but have not been as successful. Items that 9|P a g e
ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)10 may sometimes seem like routine laboratory can be similar to anatomic pathology which may be potentially upsetting. Legally and ethically, patients can access their medical records as they have ownership of this information. This is satisfied by the existence of The Canadian Data Protection Act, The Access to Health Records Act and The Medical Reports Act. Elderly parents can also designate their children to access their medical records. Likewise, legal guardians of minors can access their medical records. However, for minors access can be denied if it is proven that the minor and the medical provider have a confidential relationship. Another case is when the court orders a medical care for the child. Yet, this authority might be challenging to the healthcare providers when they document sensitive information regarding substance abuse, sexual behavior, or even taking notes about their physical appearance during the clinical visit. In this case, physicians might leave this information vague knowing that the patients might access these records. This may lead to misleading medical advice and may be followed by adverse healthcare outcomes. What are portals? Basically, a portal is a framework used to integrate and support processes, people and information across an information system. Through a portal, iEHR users will get a secure and unified gateway for their medical records. As an application interface, the portal will provide instant deployment, centralized maintenance and ergonomics which are intuitive and user- friendly. The main functions of a portal in iEHR will be the integration and presentation of medical records. The portal will be able to extract information from different sources and adjust it into a consistent and understandable form. Through the portal, it will be easy to integrate patient’s medical records, which will provide an integrated navigation gateway for multiple systems and components. Another functionality provided by a portal is customization, which will 10|P a g e
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ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)11 provide an environment for users of the system to customize their information. A portal will provide access control and security. This is in consideration to its ability to give the limitation needed for the access of medical records. Through the portal, the system administrator will easily designate the access control needed before accessing medical records. oPatient-Physician relationship: patients are the center of the attention during a clinical visit, and providing the best healthcare is the ultimate goal. But with the use of iEHR, physicians might be distracted from paying full attention to the patient, ensuring the electronic datarequirementshavebeenfulfilled.Electronicdatarequirementsrefertothesetof specifications that data to be input in the electronic health records must meet. As a consequence, they miss some psychosocial and emotional cues that could help in drawing the full picture of the patient’s health and current diagnosis.Missing those cues may result in not understanding the full health of the patient, which could lead to sub-optimal care. oFace-to-face time in examining the patient: physicians are required to comply with many documentation requirements. Such as, what to document which is based on accuracy, relevance, completeness, timeliness and confidentiality factors which govern documentation of medical records and gathering sufficient clinical data to make the best possible medical decisions. These requirements may add time pressure on direct patient’s care. This may lead to insufficient or inaccurate medical care being provided to the patient. With iEHR, this is not the case because confidentiality and privacy and integrity of patient data are enforced at the software level. This is to imply that data on patient health status will all be availed by the patient with an security measures implemented at the system level. oPatient’s Lack of confidence in the security of EHR: the use of EHR should improve communication and foster trust between the patient and the healthcare provider. Patients 11|P a g e
ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)12 sometimes avoid disclosing important information or even seek medical help due to the lack of trust in the iEHR, thinking that a family member or an outsider could gain access to this information. This act will not complete the puzzle for the physician to make the best medical decisions or treatment plans. oDemands for Secondary Data: Secondary data refers to data which is collected by someone other than the user. Secondary users refer to users of data to which they were not the primary users which may include researchers, public health organizations. In this case, patients must be informed earlier on before registering in the system because some of them may not want their information to be accessed or used by any of these agents oPublic Health Organizations as secondary users: These are organizations that focus on the prevention of diseases, prolonged life and promoting human health through organized efforts and informed choices of society, communities, and individuals. Examples include the WHO (World Health Organization). Public health information is important for monitoring health, evaluating and improving health care service delivery. The need of secondary use of personal medical information is high, and patients must be informed of the potential use of their information when registering at the iEHR so that they can make a decision whether to register or not. This is in consideration of the fact that some companies like insurance companies may wish to obtain health information about their clients who may not be willing to disclose because of various reasons. Pharmaceutical companies want health diagnosis and medication information to market drug products to patients and their physicians (Goldberg, 2000). Unauthorized disclosure of personal health information by buying this information from some EHR vendors is becoming a great concern. To avoid this scenario, patients can refuse their personal information to be saved in EHR. But in this case, another 12|P a g e
ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)13 ethical concern will arise. Which is, must autonomy always offer choice? And if there is no choice, does this mean that autonomy is violated? oDe-Identified and Re-Identified Dataset: in the de-identified dataset, elements that identify the patient/owner of this record will be deleted or altered. This data can be used in research for example. The ethical concern, in this case, is that this de-identified dataset may be re-identified by the use of publicly available data sources. Potential Solutions to the Ethical concerns in iEHR oEngage more eye contact with the patients, and engage them in the use of EHR by placing the computer in a way that patients can see the screen. oDelegating the task of documenting information during clinical visits to medical scribes. This way patients feel that they are the center of the physician’s attention, spend longer time examining patients, reading more cues, and noticing more symptoms. This, however, may not be comfortable to all patients .some may be more inhibited as now there is someone else hearing their information CONCLUSION Despite the roles in various niches of specialization, computers are needed. Developing an effective Electronic Health Record system to address more than just the clinical reporting needsrequiresexpertslikeethicists,physicians,patients,technologyprofessionals,and administrative personnel. As much as Electronic Medical Records provide many advantages, health care facilities must come up with ways to mitigate the risks associated with iEHRs Strategies are being developed and implemented to curb the risks that have been identified. 13|P a g e
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ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)14 Electronic Health Records capabilities have to be optimized to promote improvement in quality, effectiveness, and safety of health care. REFERENCES Goldberg, I. J. (2000). Electronic Medical Records and Patient Privacy. Health Care Manager, 18(3), 63-69. Hoffman, S. (2010). Electronic Health Records and Research: Privacy Versus Scientific Priorities. The American Journal of Bioethics, 10(9), 19-20. doi: 10.1080/15265161.2010.492894 Quek KF, MZain AZ. Implementation and Issues Concerning Electronic Healthcare Records. J Health Commune. 2016, 1:3. Laskowski RJ. The Power of “My”.JAMA.2016;315(12):1235. doi:10.1001/jama.2015.17153 Sittig, D. F., & Singh, H. (2011). Legal, ethical, and financial dilemmas in electronic health record adoption and use.Pediatrics,127(4), e1042-7. Sulmasy, L. S., López, A. M., Horwitch, C. A., American College of Physicians Ethics, Professionalismand Human RightsCommittee(2017). EthicalImplicationsof the 14|P a g e
ETHICAL CONCERNS WITH INTEROPERABLE ELECTRONIC HEALTH RECORDS (IEHR)15 Electronic Health Record: In the Service of the Patient.Journal of general internal medicine,32(8), 935-939. Ozair, F. F., Jamshed, N., Sharma, A., & Aggarwal, P. (2015). Ethical issues in electronic health records: A general overview.Perspectives in clinical research,6(2), 73-6. BIBLIOGRAPHY Abrams, K. J, & Gibson, C J (Eds.). (2013). Fundamentals of Health Information Management (2nded). Ottawa, ON: Canadian Health Association. Doherty, R. F., & Purtilo, R. B. (2016).Ethical Dimensions in the Health Professions(6thed.). St. Louis, MO: Elsevier. Rozovsky, L. E., & Inions, N. J. (2002).Canadian Health Information(3rded.). Markham, Canada: LexisNexis. 15|P a g e