Older LGBTQ+ and blockchain in healthcare: A value sensitive design perspective

2.1 The blockchain

In 2008, Satoshi Nakamoto introduced blockchain. Blockchain was not a major technological innovation, but incremental development of existing technologies such as private–public key encryption and peer-to-peer networks developed in the 1970s, consensus mechanisms, and decentralized, distributed data storage developed later [14]. Blockchain is an open, public ledger stored on many decentralized nodes to support intermediary-free transactions called decentralized, trustless peer-to-peer transactions [8]. That is, participants in the network need not trust each other [7]. Iansiti and Lakhani [15] defined blockchain as “an open, distributed ledger that can record transactions between two parties efficiently and in a verifiable and permanent way,” while Bacon et al. [7] referred to the blockchain as “a specific type of database that uses certain cryptographic functions to achieve the requirements of data integrity and identity authentication.” On its side, the National Institute of Standards and Technology defines it as follows:

“Blockchains are distributed digital ledgers of cryptographically signed transactions that are grouped into blocks. Each block is cryptographically linked to the previous one (making it tamper evident) after validation and undergoing a consensus decision. As new blocks are added, older blocks become more difficult to modify (creating tamper resistance). New blocks are replicated across copies of the ledger within the network, and any conflicts are resolved automatically using established rules” [16].

Distributed ledger technologies have several advantages over existing systems, such as traditional distributed database management systems like structured query language-based systems and non-relational systems [17] and traditional ledger-based system architectures which relied on a central or trusted third-party ledger [18]. It allows data integrity by creating persistent records of relevant transactions and identity authentication without involving intermediaries, i.e., it eliminates the middleman [7]. Before blockchain, it was impossible to organize individual activities over the Internet without a centralized body and ensure no interference. It is considered a tamper-proof system unless the controlling parties decide to alter the history of the blockchain [19], supported by an append-only data structure and a data verification feature via consensus protocols. These protocols remove the risk of duplicate entry or fraud [8]. It also heavily relies on cryptography to secure the data ledgers with both the current and its adjacent completed block involved in the cryptography process [8]. Registered transactions cannot be altered unless the whole chain of actual recorded transactions is changed with mutual consensus, ensuring that the data stored on the blockchain are reliable and not edited without traceability. In this way, blockchain “provides a way for people to agree on a particular state of affairs and record that agreement in a secure and verifiable manner” [14].

Additionally, with blockchain, all transactions are recorded in chronological order, time-stamped, and visible to everyone on the blockchain, making it transparent. Users can remain anonymous as transactions occur between encrypted alphanumeric addresses. Users can programmatically set up algorithms to trigger transactions [20]. The origin of any ledger can be backtracked along the chain. The ledger is distributed across every single node in the blockchain, making it highly distributed. All transactions stored in the blocks are contained in the chain, making it decentralized and guaranteeing data recovery. These features make blockchain technology extremely useful, with salient advantages of transparency, decentralization, and security in many sectors, including government [21] and business [22]. Companies have been using blockchain to track items through complex supply chains for a while [15], and its adoption has been critical for meeting the citizens’ demands. Schuetz and Venkatesh [23] showed, for instance, that by increasing financial inclusion in rural areas, blockchain technology has the potential to connect rural populations to supply chains. In the energy sector, distributed ledger technologies may advance energy practices and processes’ efficiency, advance decentralized generation, and allow peer-to-peer energy trading [24].

Although the recent hype of blockchain and its transition to AI, the research on blockchain adoption is still in its infancy. Until now, the adoption of such complex technology research highlighted professionals’ expectations [25], but it still lacks a greater understanding of how particular populations, such as older adults, would see the benefits of applying such a technology. Furthermore, there is a lack of literature on the challenges these technologies pose to users and with which remedies they are empowered to mitigate those risks.

2.2 Healthcare and blockchain

Medicine falls behind other sectors in embracing new technologies, as it is a highly complex, sensitive, and regulated sector [26]. Together with the continuous shortage in healthcare budgets, the difficult choice in expenditure allocation, and the potential adverse effects on users, the adoption of healthcare technologies is not straightforward. Thus, there are no significant surveys investigating distributed ledger technology applications in healthcare. However, the literature stresses that they could address urging issues in healthcare, such as fragmented records and hard access to patient health information, thanks to fundamental features like immutability, decentralization, and transparency [27]. There are numerous systems applying blockchain in healthcare found in the literature. Some examples include mobile healthcare applications with cloud storage [2]; blockchain-enabled diagnosis and treatment systems [28]; cloud-based health resource sharing for diagnosis [29]; EHR management [30]; drug supply chain governance [31]; and monitoring of data across multisite clinical trials [32]. The literature also reports various possible benefits provided by introducing blockchain in healthcare, including convenient data sharing [29], increased data security and privacy [2,32], greater privacy [30], more transparency [31], data ownership and control [33], interoperability [28], and advanced data traceability [34]. Table 1 illustrates some of the most common applications of blockchain in healthcare and their benefits.

These systems and their potential benefits could be classified in several categories, including (1) data management applications to unify and more effectively handle patient details (e.g., integration and encryption of digital assets to ensure data reliability and protection, as well as patient identity and confidentiality, patients’ health records, and cloud healthcare data storage) and to facilitate data sharing between healthcare institutions, (2) supply chain management, including drugs, vaccine, and pharmaceutical supply chain, (3) internet of medical things, (4) biomedical research and education, i.e., to merge data for research purposes and minimize academic fraud, (5) health data analytics, including remote patient monitoring, supervision of drug intake, (6) health insurance claims, reporting, and fraudulent billing protection, and (7) health clinical trial analytics [1,8,34,45,47,48].

One of the most promising applications of distributed ledger technologies in healthcare is EHR. An EHR is a collection of patient data “designed to allow patient medical history to move with the patient or be made available to multiple healthcare providers” [47]. EHRs allow the electronic exchange of health information with different providers to improve patients’ quality of care in a meaningful way. EHRs improve clinical decision-making, reduce duplication of diagnostic testing, better medication management, increase the adoption of screening programs, and improve coordination among medical professionals [33]. More broadly, other potential benefits of blockchain healthcare technology could also be seen in patient monitoring [35]. For example, Rupasinghe et al. [49] present a conceptual BCHIS that manages and analyzes EHRs to identify older adults in care who are at higher risk of falling. As another example, Uddin et al. [50] designed an end-to-end eHealthcare framework to facilitate professional data sharing and safeguarding EHR privacy via blockchain. An example in the plain language of blockchain-enabled EHRs is as follows:

“When new healthcare data for an aged care patient is created, that data is first encrypted and then a new block containing that data is instantiated and distributed to all peers in the patient network. If a majority of the peers have approved the new block, then the IS will append it to the chain; otherwise, the block will be rejected from the main chain. Once in the chain, the block cannot be modified without modifying all subsequent blocks and thus data modification is easily detected. Aged care patients can link their identity to blockchain data through a private key and share it with other care organizations. This tamper-proof care data is immediately visible and retrievable to all connected organizations, making blockchain the single source of accurate, trustworthy information” [47].

The current state of aged care EHRs is disjointed due to a lack of greater interoperability between providers and hospital IS, especially concerning unified data, common architectures, and privacy and transparency concerns [51]. The adoption of EHRs by healthcare entities is varied worldwide. Factors affecting adoption include an institution’s technological infrastructure [52]. Moreover, the push for personal EHRs, for which patients are more involved in health data collection (e.g., through smartphones or wearable devices) and data management, introduces further security and privacy challenges [33]. As a solution to the current problems with EHRs and similar challenges with other healthcare IS, blockchain technology seeks to offer a transparent and tamper-proof platform to support the integration of care-related information across a range of care and cure applications and stakeholders. The integration of blockchain technology into healthcare may improve the reliability of health data, making it resistant to tampering and revision while also enabling better accessibility and data transparency [48].

Although BCHIS may bring about incredible progress in healthcare delivery, more research and co-design are needed to ensure these systems account for the diversity of values found in healthcare and avoid bias. Gender and sex considerations in healthcare are crucial because they affect individuals’ health differences, yet most algorithms deployed in the healthcare context do not consider these aspects. Missing these kinds of dimensions in healthcare IS raises concern, as neglecting these aspects risks potential discrimination [53]. Questions about the consequences of missing the gender and sex dimensions in algorithms that support decision-making processes are nevertheless particularly poorly understood and often underestimated [54,55]. Still, technology is not value-neutral and can have adverse consequences if values are not considered. This is particularly salient in healthcare because it is a sensitive domain of application with very distinct values that, if missed, can have disastrous consequences for the safety of the patients.

3.1 VSD

We contribute to the literature by reflecting on the interplay between values, aged care, and distributed ledger technologies through a VSD approach. VSD is a methodology used to investigate values relating to the technological ecosystem and design systems that account for user values [3]. In VSD, values refer to “what is important to people in their lives, with a focus on ethics and morality” [3]. VSD seeks to empower human values in the design of technology. Today, we can see blockchain as a technology that supports human beings in a highly connected digital world as moral and prosocial persons to give and involve reliable signals of trustworthiness. In the design of new BCHIS, there is a strong need for a comprehensive theoretical and methodological framework to deal with the value dimensions of its design.

VSD considers human values during the design of new IS, or the evaluation of an old one, to resolve value conflicts and promote positive value impacts. Friedman and Hendry [3] explain the three iterative investigations used in VSD as follows.

1. Conceptual investigations define the IS users and other stakeholders, identify the values of all stakeholders who interact with the IS and conceptually examine how the IS design will positively and negatively impact those values.

2. An empirical investigation aims to create further knowledge about those values concerning the IS through empirical means.

3. The technical investigation involves designing a new IS to support values as they have been understood empirically, or analyzing how users interact with an existing IS.

Like other healthcare technologies, BCHIS ought to be designed for stakeholders’ values, promote positive value impacts, and mitigate adverse effects. To highlight the required value and cultural sensitivity of BCHIS to avoid the replication of bias, considering the values of a specific community, in this case, the older LGBTQ+ community is crucial. In the following sections, we conduct a conceptual investigation of the values that LGBTQ+ older adults have at stake within BCHIS.

3.2 Case study: LGBTQ+ older adults

Each community has a value framework of value priorities, meanings, and orientations [10], and LGBTQ+ older adults are no different [11]. Tenenbaum [56] describes the older LGBTQ+ community as having distinct values, concerns, needs, and critical and experiential interests in aged care. In the search for cultural sensitivity, many LGBTQ+ persons seek out LGBTQ-friendly health services and professionals who are sensitive to their needs and values [57]. The difficulty of finding an LGBTQ-friendly doctor leads to this group being “more likely to delay or avoid necessary medical care compared with heterosexuals” (29% versus 17%, respectively) [58].

The older LGBTQ+ community’s values are under-surveyed [59], let alone their values concerning technology generally and distributed ledger healthcare technologies specifically. This lack of understanding challenges the recognition of the effects and impacts on this community, hindering these systems’ potential benefits. This community’s values are worthwhile investigating in BCHIS design and development to ensure they avoid discrimination and the exacerbation of existing bias against the queer community [12,60]. The modicum of the literature suggests that LGBTQ+ older adults prioritize values of acceptance, privacy, and personhood [56]; inclusive language and disclosing gender identity or sexual orientation [61]; and autonomy and empowerment [62]. LGBTQ+ older adults also have different value meanings. For example, the value of family is often interpreted as a “chosen family” consisting of close friends, rather than relatives [63], and intersex older adults define the value of “non-judgmental care” concerning their intersex status, as it impacts their physical, hormonal, or genetic differences [64].

4.1 Key values in blockchain for healthcare

In the literature, blockchain is primarily promoted as supporting the trustworthiness, integrity, and reliability of data (hereafter referred to collectively as trust), security, privacy, transparency, interoperability, and user control [1,2]. In addition to these being potential benefits of blockchain, several are also human values. That is, blockchain in healthcare evokes several values, including (1) patient trust in the integrity and reliability of her health data, (2) security of patient health data, and (3) privacy of patient health data.

In a survey measuring trust in health information sources, Hesse et al. [65] found that respondents expressed a high level of trust for information provided by physicians, higher than that offered by the Internet, television, radio, family or friends, and other media. As such, the value of trust might relate to health information sources. Alternatively, it could relate to trust in care professionals. According to the care ethics tradition, mutual trust between patients and their caregivers is essential to good care [66]. In care ethics, values such as trust exist within the caring relationship between patient and caregiver, not necessarily in the health information they provide, as this is implicit in the trusted relationship. Moreover, implied in the trusted relationship is the assurance of security and privacy.

Security in healthcare can also be defined in different ways. Haas et al. [67] draw a connection between security and access to information, suggesting that enabling “access to an increased number of users poses threats to security and privacy.” In this sense, security restricts unnecessary access to information and guarantees trustworthiness. Security also relates to privacy. Without protecting health information, a patient’s privacy is vulnerable [68]. In Europe, the General Data Protection Regulation establishes binding legal requirements to enforce the protection of these values.

In a review of the state of information security and privacy in healthcare, privacy is described as “a key governing principle of the patient-physician relationship” [69]. Akin to security, privacy also refers to protecting personal data, which is governed by legislation and is geared toward giving back control to users and the possibility to rectify, oppose, and cancel the processing of such data. In their proposed framework for ensuring the privacy of EHRs, Haas et al. [67] present privacy as a driving need to securely guarantee the “controlled disclosure of personal data to third parties.”

4.2 Additional values in healthcare and technology design

Examining blockchain in healthcare through a VSD lens, there exist other values that current blockchain technology does not make justice, although it may impact them. According to Friedman et al. [70], there are some core values involved in any system design. Table 2 lists and defines those values.

The initial conceptual investigation above shows the emergence of the most salient values implicated in blockchain in healthcare – trust, security, and privacy – however, it lacks a practical examination of the diversity of values in this environment. Whereas security is interpreted by the technical community as an essential value, from the user’s perspective and the healthcare system’s goals, other values are also deemed necessary. Ensuring values are of paramount importance in healthcare. To follow is a non-comprehensive exploration of the aforementioned core values in relation to healthcare technology, including blockchain.

1. Discrimination and bias: Different cultures have distinct value sets, comprising different value priorities, meanings, conceptualizations, and definitions [10]. Culture shapes a person’s value system; one of the most significant influences on an individual’s values is each person’s cultural background [71,72]. Cultural knowledge, i.e., understanding cultural values, is key to cultural competence in care, including technology-driven care [73].

2. Consent and autonomy: Although distributed ledger technologies provide a “shared, immutable, and transparent audit trail for accessing data” [49], this data is used on many occasions as a basis for predictive analysis, which has several associated ethical, legal, and societal concerns [74]. Predictive analytics refers to the use of statistical models to determine future performance based on current and historical data and raise questions in the context of healthcare. These questions range from how patients gave meaningful consent. What if harm could have been averted if physicians would study their patients more carefully instead of relying on predictive models [75]? The legal research is also rich in pointing out the risks to privacy and data protection in this regard, even in connection to the fairness, accountability, and transparency of the models, for inferences and decisions made upon predictive algorithmic decision-making [76]. Making information open and transparent requires the affected individuals to understand and assess the risks of predictive analytics and automated decision-making systems, allowing them to challenge decisions concerning them [77].

3. The fact that distributed ledgers eradicate the middleman also blurs the accountability linked to them. The implementation of blockchain must ensure that a group of persons, institutions, or legal entities are accountable for their actions and assume responsibility.

4. Courtesy: In healthcare, good care practice requires cultural competence, value sensitivity, and person-centeredness [13,78]. Since technology is not value-neutral [3], healthcare technologies also need to demonstrate value sensitivity and cultural competence. Good cultural competence in the provision of care is value-based [79], and thus, cultural competence in healthcare technologies could be achieved with a VSD approach [80,81].

5. Identity: The value of identity is complicated. One’s identity is respected in that the person retains personal data ownership using blockchain. However, at the same time, parties are pseudonymous, so one’s identity is partially lost on the blockchain.