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Karacic Zanetti, J.; Nunes, R.; Karacic, J. Digital Health Information Storage. Encyclopedia. Available online: https://encyclopedia.pub/entry/44997 (accessed on 25 April 2024).
Karacic Zanetti J, Nunes R, Karacic J. Digital Health Information Storage. Encyclopedia. Available at: https://encyclopedia.pub/entry/44997. Accessed April 25, 2024.
Karacic Zanetti, Jasna, Rui Nunes, Jasna Karacic. "Digital Health Information Storage" Encyclopedia, https://encyclopedia.pub/entry/44997 (accessed April 25, 2024).
Karacic Zanetti, J., Nunes, R., & Karacic, J. (2023, May 30). Digital Health Information Storage. In Encyclopedia. https://encyclopedia.pub/entry/44997
Karacic Zanetti, Jasna, et al. "Digital Health Information Storage." Encyclopedia. Web. 30 May, 2023.
Digital Health Information Storage
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The concept of the health wallet, a digital platform that consolidates health-related information, has garnered significant attention in the past year. Electronic health data storage and transmission have become increasingly prevalent in the healthcare industry, with the potential to revolutionize healthcare delivery.

e-health health wallet digital health GDPR patient identification and authentication

1. Introduction

In today’s digital age, e-health data has become an essential part of healthcare services. E-health data comprises health-related information that is electronically stored and transmitted through various electronic devices and networks, including medical records, diagnostic results, and patient information [1]. Digital health is a rapidly growing field that promises to revolutionize healthcare by providing innovative solutions to long-standing problems. In recent years, there has been a significant shift towards digital health information storage, with the increasing adoption of electronic health records [EHRs] and other digital health technologies. With the rapid advancement of technology, it is crucial to recognize the ethical implications of digital health and ensure that ethical considerations are at the forefront of this field’s development [2]. Health information storage refers to the secure electronic storage of personal health records, while a health wallet is the concept of an integrated digital platform that allows individuals to manage and control their own health information [3].
The idea behind the health wallet is to empower individuals to take control of their health by giving them access to their medical records, lab results, prescription information, and other health-related data. The purpose of a health wallet is to provide individuals with more control over their own health information, making it easier for them to access and share their information with healthcare providers, family members, or other relevant parties [4]. Some health wallets may also allow for the integration of data from wearable devices and other health-related apps, providing a more comprehensive view of an individual’s health. The health wallet concept also aims to make it easier for individuals to share their health information with healthcare providers, researchers, and other relevant parties. This can improve the coordination of care and ultimately lead to better health outcomes [5].
Several companies and organizations are currently developing health wallets, and some governments are exploring the concept as part of their national healthcare strategies [6]. One that piqued interest is The Electronic Identification, Authentication, and Trust Services (eIDAS) Regulation, which is legislation adopted by the European Union (EU) in 2014 that provides a framework for secure and reliable electronic transactions across the EU [7].
Cross-border identity verification also plays a critical role in patient identification and authentication. In cross-border healthcare, patients may receive medical treatment from healthcare professionals who are unfamiliar with their medical history, making accurate identification and authentication of patients even more crucial. Verifying the identity of patients is essential to ensure that they receive the right treatment and medication, prevent medical errors, and protect patients’ privacy and confidentiality [8].
While this has many potential benefits, such as improving patient care and reducing medical errors, it also raises concerns about data security, privacy, and access. As such, the debate over digital health information storage has become a hot topic in the healthcare industry, pointing out the advantages and practicability of personalized medicine, reducing medical errors, and empowering patients while protecting privacy.
This topic is critical for understanding the future of healthcare and the implications of adopting digital health technologies. One of the major aims of this work was to explore the arguments for and against digital health information storage and to understand the potential impact of these technologies on healthcare delivery and patient outcomes.

2. Problem at a Glance

The relationship between doctors and patients is built on mutual trust and respect, which are essential components of effective healthcare. The quality of the relationship and trust between a doctor and a patient can significantly influence the patient’s treatment plan and overall health outcomes. When patients trust their doctors, they are more likely to adhere to treatment plans, follow medical advice, and engage in shared decision-making. Trust and good communication between doctors and patients can also improve patient satisfaction and lead to better clinical outcomes. The trust between doctors and patients is built on medical ethics, and when it comes to making decisions about giving access to personal health records, confidence is essential.

2.1. Ethics

Medical ethics provides the framework for ethical behavior in healthcare and establishes the standards for appropriate conduct and decision-making [9]. Doctors who follow ethical principles and guidelines are more likely to earn their patients’ trust and confidence as they demonstrate a commitment to professionalism, integrity, and patient-centered care. Medical ethics plays a key role in addressing ethical issues and conflicts that can arise from data sharing and health wallets. Medical ethics is a complex and evolving field that deals with a wide range of ethical dilemmas and issues related to healthcare. It also involves developing and applying ethical standards and guidelines to ensure that healthcare practices are conducted in a manner that is consistent with professional and societal expectations. Medical ethics aims to promote respect for patients’ autonomy, dignity, and well-being while balancing competing interests and values.
One of the primary ethical considerations in digital health is the protection of patient privacy and data protection in accordance with the universal right to healthcare. The use of electronic health records, health apps, and other digital technologies requires that sensitive patient data be collected and stored securely [10].
It is essential to ensure that patients have control over their data, including the ability to access and review their information, correct inaccuracies, and determine who has access to their data and that it is not used or shared without their consent, as well to ensure that patient data is securely stored and that data is only accessed and used for its intended purpose [10]. This control on personal information also includes the right to be forgotten, meaning that any person has the ethical and legal right to erase personal health information from the digital system, as long as the rights of third parties are not unethically compromised [11].
The development of digital health technology must, therefore, include strong privacy protections and safeguards to prevent data breaches.
Another important ethical consideration is the potential for digital health technologies to exacerbate existing health disparities. It is critical to ensure that the benefits of digital health are accessible to everyone, regardless of their socioeconomic status or geographic location. Digital health should be designed with an equity lens and should strive to reduce, rather than perpetuate, existing health disparities [12].

2.2. Data Privacy and Access

While e-health data has many benefits, its use can also affect two crucial patient rights: the Right to Free Choice and the Right to Privacy and Confidentiality [13].
The Right to Free Choice is a fundamental right of every patient to choose their healthcare provider and receive treatment that aligns with their personal values and preferences. E-health data can affect this right because it may limit a patient’s ability to choose a provider or receive the type of treatment they prefer. For example, if a patient’s medical records indicate that they have a pre-existing condition, some insurance providers may deny them coverage or only offer limited treatment options, which may limit the patient’s ability to choose the best care for themselves [14]. The Right to Privacy and Confidentiality is another essential patient right that can be affected by using e-health data. This right ensures that patients have control over their health-related information, and healthcare providers cannot disclose it without their explicit consent. E-health data can affect this right because it is often stored on electronic devices that are vulnerable to hacking and unauthorized access. Additionally, some healthcare providers may share a patient’s health-related information with other providers or third parties without their consent, which can compromise their privacy and confidentiality [15]. The problem is even more complex because some digital infrastructures are geographically localized in countries with different laws and different ethical backgrounds.
One of the main problems with digital health, when all healthcare professionals can see the history of all treatments in the same hospital, is the issue of patient privacy and data protection. While having a shared electronic health record can improve the coordination and quality of care, it also raises concerns about who has access to a patient’s sensitive health information and how it is being used [16]. Inappropriate access to patient health records can lead to breaches of patient confidentiality, which can have serious consequences for patients and healthcare providers. Additionally, if patient data is not properly secured, it may be vulnerable to cyberattacks and data breaches, which can compromise the privacy and security of a patient’s health information [17].
The abuse of patient data in hospital computer systems can have serious consequences, including breaches of patient privacy, discrimination, and other harms. Such abuse may occur if hospital staff or others with access to patient data use it for purposes beyond those authorized by the patient or for their own personal gain.
To prevent such abuses of patient data, hospitals and healthcare providers must have strong data protection policies in place, including secure computer systems and appropriate access controls to limit access to sensitive patient information. Staff should receive regular training on the importance of protecting patient data and the consequences of breaching privacy rules, namely from a criminal perspective.
One example of abuse of patient data is identity theft, where personal and medical information is stolen and used for fraudulent purposes. In some cases, patient data may also be used to discriminate against patients based on their medical history or other characteristics, such as race or gender [18].
Another potential issue is the sale or unauthorized sharing of patient data to third parties, such as insurance companies, marketers, or other healthcare providers. This can result in patients being targeted for marketing or other purposes without their knowledge or consent.
Furthermore, there may be practical challenges associated with implementing a shared electronic health record system, such as ensuring that all healthcare professionals have access to the system and are trained in how to use it effectively. There may also be challenges related to standardizing data and ensuring that information is entered accurately and consistently.
Overall, while a shared electronic health record system can have many benefits, including improved coordination of care and better outcomes for patients, it is important to carefully consider the potential risks and challenges associated with such a system, particularly in terms of patient privacy and data protection [19]. Healthcare providers and organizations must implement robust security measures and ensure that all users of the system are trained in the best practices for maintaining patient confidentiality and protecting patient data.

2.3. Cross Border

The use of digital health technologies in cross-border healthcare presents several challenges and problems that need to be addressed to ensure that patients can benefit from these technologies while also protecting their safety, privacy, and rights [20] (Table 1). Addressing these challenges will require collaboration and coordination between different countries, healthcare providers, companies, and regulators.
Table 1. Challenges and problems associated with the use of digital health in cross-border healthcare.
However, both the approval of the General Data Protection Regulation ((GDPR) [21]) as well as the Proposal for a Regulation of the European Parliament and of the Council on the European Health Data Space [22], are huge steps for a more comprehensive and harmonized data space, at least in the European Union.

2.4. Data Security and Accuracy

One of the biggest concerns with digital health information storage is data security. Medical records contain sensitive information that can be used for identity theft or fraud. Protecting this data from cyber-attacks and breaches is crucial, and healthcare providers must implement strong security measures to ensure patient privacy.
Health data must be accurate and up-to-date to be useful. However, errors can occur during data entry, which can affect the accuracy of the data. Data quality can be affected by the lack of standardization in data collection and storage across different systems and providers. Quality assurance programs must be implemented by health organizations to guarantee appropriate levels of security and accuracy.

2.5. System Complexity and Interoperability

Digital health information storage systems can be complex and difficult to use, especially for healthcare providers who are not familiar with the technology. This can lead to errors and frustration and may prevent some providers from using the systems to their full potential. It follows that programs on digital health targeted at healthcare professionals should be implemented, namely for the acquisition of digital skills and inclusion.
Digital health information storage systems are often not interoperable, meaning they cannot easily share information with other systems. This can lead to the fragmentation of health data and make it difficult for healthcare providers to access complete and accurate patient information.

References

  1. Topol, E. The Topol Review: Preparing the Healthcare Workforce to Deliver the Digital Future; Department of Health and Social Care: London, UK, 2019.
  2. McCarthy, J.A.; DeRenzi, B. Ethical Considerations in Digital Health. Curr. Opin. Cardiol. 2021, 36, 509–513.
  3. Wollaston, L. The Health Wallet: A Digital Tool to Empower Individuals in Managing Their Health-Related Information. J. Med. Internet Res. 2019, 21, e13147.
  4. Ammenwerth, E.; Duftschmid, G.; Gall, W.; Hackl, W.O.; Hoerbst, A.; Janzek-Hawlat, S.; Jeske, M.; Jung, M.; Woertz, K. The future of electronic health records: A commentary. J. Med. Syst. 2020, 44, 204.
  5. Bauer, S.; Perkmann, T.; Muaremi, A.; Grünerbl, A.; Grundlehner, J.; Mayr, M.; Kegel, M.; Schreier, G.; Hintermüller, C.; Hotter, M.; et al. Towards a Personal Health Record System for Mental Health: Implementation and Evaluation of the MyRecovery Hub System. J. Med. Internet Res. Ment. Health 2017, 4, e5.
  6. World Health Organization. Global Diffusion of eHealth: Making Universal Health Coverage Achievable; World Health Organization: Geneva, Switzerland, 2016; Available online: https://apps.who.int/iris/bitstream/handle/10665/252529/9789241511780-eng.pdf?sequence=1 (accessed on 23 February 2023).
  7. European Commission. eHealth Action Plan 2012–2020: Innovative Healthcare for the 21st Century; European Commission: Brussels, Belgium, 2012; Available online: https://ec.europa.eu/digital-single-market/en/news/ehealth-action-plan-2012-2020-innovative-healthcare-21st-century (accessed on 23 February 2023).
  8. Karacic, J. Europe, we Have a Problem! Challenges to Health Data-Sharing in the EU. In Proceedings of the 18th International Conference on Wireless and Mobile Computing, Networking and Communications , Thessaloniki, Greece, 10–12 October 2022; pp. 47–50.
  9. Gomes, R.M.; Pinheiro, P.; Ferreira, D.; Moreira, F.; Coimbra, M.; Rodrigues, P.P.; Silva, A.; Simões, R.; Alves, V.; Santos, M.Y.; et al. Ethics in Digital Health. J. Med. Syst. 2021, 45, 80.
  10. Nunes, R. Healthcare as a Universal Human Right: Sustainability in Global Health; Routledge: London, UK; New York, NY, USA, 2022.
  11. Correia, M.; Rego, G.; Nunes, R. Gender transition: Is there a right to be forgotten. Health Care Anal. 2021, 29, 283–300.
  12. Torous, J.; Roberts, L.W.; Holtzheimer, P.E. (Eds.) Ethical and Legal Issues in Digital Health; Academic Press: Cambridge, MA, USA, 2019.
  13. American Medical Association. Patient Rights. Available online: https://www.ama-assn.org/delivering-care/ethics/patient-rights (accessed on 25 February 2023).
  14. Pritts, J.L. The importance and value of protecting the privacy of health information: Roles of the HIPAA Privacy Rule and the Common Rule in health research. Mich. State Law Rev. 2006, 2006, 1307–1329.
  15. Gurvich, A. The Right to Privacy in the Digital Age; The New York Times: New York, NY, USA, 2013; Available online: https://www.nytimes.com/roomfordebate/2013/11/22/the-right-to-privacy-in-the-digital-age (accessed on 23 February 2023).
  16. Robillard, J.M.; Johnson, T.W.; Hennessey, C.; Beattie, B.L.; Illes, J.; Juengst, E.T.; Keay-Bright, W.; Lidster, R.T.; Rouleau, G.; Smith, M.J. Engaging Privacy and Information Technology in a Digital Age; National Academies Press: Washington, DC, USA, 2016. Available online: https://www.ncbi.nlm.nih.gov/books/NBK424347/ (accessed on 23 February 2023).
  17. Sweeney, L. Privacy: A precious right and a fundamental freedom. J. Law Med. Ethics 2009, 37, 712–722.
  18. Li, Y.; Li, L. Privacy protection for patient data sharing in clinical trials. BMC Med. Ethics 2019, 20, 56.
  19. Schwartz, A.H.; Kulikowski, C.A. Data protection and privacy issues for healthcare information technology. J. Am. Med. Inform. Assoc. 2008, 15, 283–292.
  20. Kierkegaard, P. Health data exchange and data protection across borders: The example of the EU and the USA. Int. J. Med. Inform. 2007, 76, 133–141.
  21. European Union. General Data Protection Regulation. Regulation 2016/679 of the European Parliament and of the Council of 27 April 2016 on the Protection of Natural Persons with Regard to the Processing of Personal Data and on the Free Movement of Such Data. 2016. Available online: http://eur-lex.europa.eu/legal-content/PT/TXT/?uri=CELEX:32016R0679 (accessed on 23 February 2023).
  22. European Commission. Proposal for a Regulation of the European Parliament and of the Council on the European Health Data Space; European Commission: Brussels, Belgium, 2022.
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