Diversity via datafication? Digital patient records and citizenship for sexuality and gender diverse people

In 2018, the Australian Government adopted an ‘opt-out’ strategy to increase participation in My Health Record (MHR), the national digital patient record system. Opt out was rationalised through discourse on the universal right to health. Media controversy ensued due to privacy fears, security and commercial exploitation of patient information. LGBT community organisations warned that people with complex health needs should consider their privacy and legal situation when deciding whether or not to opt out of MHR. With reference to the health needs of sexuality and gender diverse people, we examine MHR’s rights universalism, possessive individualism, and state-based rationalisation of health governance. MHR hails all but no-one in particular, erasing diversity and straightwashing data medicine. It is a technological solution to state-based imperatives for health governance, an emphasis that does not serve minority communities or address health needs that attract stigma and prejudice. We counterpose these effects with citizenship framings seated in critical approaches to data assemblages and sexuality and gender diversity. We suggest ways in which data medicine, of which MHR is but one example, can be made more relevant and effective for individuals and communities whose healthcare is poorly served by mainstream health systems.

In this paper, we employ a citizenship lens to investigate how sexuality and gender diverse people will be able to benefit from rapid developments in 'big data medicine'. Increased data capture and processing capacity is transforming the popular, medical and scientific imaginaries of what biodata, algorithms, machine learning and AI, among other resources and technologies, will be able to do for healthcare. This flourishing data medicine is promising manifold improvements in health, including: enhanced detection of pathologies using AI-enabled scanning technologies; mobile technologies that permit real time biofeedback of the impact of treatments on pathogens, tumours and the body, including in clinic trials; and screening individuals using facial recognition for early signs of depression and anxiety. These technologies, it is argued, will increase efficiency and effectiveness in healthcare, helping to curb costs and enhance patient outcomes (Davis et al. 2019). Underlining this valuing of data medicine, Google acquired the personal bio-tracking technology FitBit in late 2019 (Phelan 2019), presumably because the data derived from the technology can enhance the marketing of healthcare products, but also because it may become important to healthcare itself. Google's forays into health have included the use of Google Trends to assess public responses to disease outbreaks (Smolarchuk et al. 2019), and its search engine is a popular source of consumer products and services, but therefore also extensive data about consumers. These developments underline how digital technologies and the biodata upon which they depend have become important in healthcare provision and research (Hoeyer 2019). At the same time, commercial exploitation of digital data (Duckett 2019) and the opacity of algorithms used to analyse data (Erikainen et al. 2019) in and beyond healthcare have become significant ethical and regulatory challenges (Mendelson 2018;Mendelson and Wolf 2016), particularly as digital data travels instantly across national boundaries. These developments portend shifting conditions for the value of data and its ownership articulated with the rationalities of private enterprise, the public good and individual health benefit. How these transformations of healthcare intersect with the lives of sexuality and gender diverse people (that is, lesbian, gay, bisexual and trans people) has been hitherto largely neglected in sociological research and will be the focus for this paper. In particular, we examine Australia's My Health Record (MHR; Mendelson 2018) as a key component of data medicine with ramifications for sexuality and gender diverse people and their healthcare.
MHR and other electronic patient record systems are central to data medicine (Ebeling 2019) because they supply fine-grained information about medical histories, treatments and health outcomes. These systems comprise national digital databases that record visits to the doctor, diagnoses, vaccination histories, health status, treatments and rehabilitation. International examples include: sundhed. dk (Denmark), My Kanta (Finland), Medmij (Netherlands) (Flaumenhaft and Ben-Assuli 2018); care.data (UK) (van Staa et al. 2016); and Journalen (Sweden) (Armstrong 2017). MHR, in particular, is said to have several benefits (Biggs et al. 2019), including: reduced drug treatment errors and duplication of pathology testing and imaging; enhanced coordination of care; enabling patients to track and better manage their own care; and permitting patients to ask clinicians to not upload sensitive information and restrict who has access to their records.
Electronic patient records, however, can do more than capture data. New materialism reveals electronic patient records as assemblages of human and non-human actants (Fox and Alldred 2015;Lupton 2019b). In this framing, analysis focusses on how social relations, technologies and knowledge systems align to make data (Lancaster and Rhodes 2020; Rhodes and Lancaster 2019), enabling the counting and coding of assumptions about the world, but therefore also shaping how the world can be known with attendant material and symbolic effects. In this approach, critical inquiry focusses on the conditions within which human and non-human elements are assembled and in particular the assumptions, ideologies and ethical stances that bring forms of data medicine into being. This point of view focusses on the co-constitution of electronic patient records and the clinical encounter, for example, and therefore how health outcomes take shape in data medicine assemblages.
For sexuality and gender diverse people electronic patient record systems raise extensive opportunities and deep challenges. Complex and intersecting health needs related to gender affirmation, sex work, HIV treatment and prevention, sexually transmitted infections, illicit and injecting drug use, depression and anxiety, among others, may be assisted by digital records that track frequent use of healthcare across multiple providers. But also, digital records raise considerations of privacy, consent and control (Duckett 2019). As we will discuss in detail below, during the roll out of MHR in 2018, individuals were counselled by health advocates to consider legal advice that their data may not be protected from third party uses, for example, by insurance companies, police and commercial entities (Living Positive Victoria 2018; National LGBTI Health Alliance 2018; Scarlet . That year also, the Cambridge Analytica scandal broke into the international news media, underlining the widespread practice of using personal digital data without informed consent for commercial and political purposes (Bartholomeusz 2018). National survey findings (Newman et al. 2020), show that some sexuality and gender diverse people opted out of MHR due to fears of loss of data privacy and the power to consent to the various uses of personal data by third parties. International efforts to establish similar national health data bases have also had mixed results. In the UK, attempts have been shelved due to implementation and public trust challenges (Lupton 2019a;van Staa et al. 2016).
Attention to the participation of sexuality and gender diverse people in MHR and similar technologies is significant for reasons of healthcare quality, right to privacy and the generation of knowledge about health that MHR is thought to be able to deliver. People with complex health needs related to sexuality and gender diversity may associate healthcare with personal or community experiences of stigma, discrimination and harm, which may therefore exclude them from the benefits that may arise from MHR. These challenges intersect with general efforts to protect patient rights to privacy and autonomy in an era of increasingly linked-and leaky-data systems. Address to these challenges is vital since electronic patient records are integral to burgeoning research on big data and health outcomes (Hoeyer 2019). Gaps in data are likely to compromise the effectiveness of data medicine. More specifically, gaps in data for sexuality and gender diverse groups are likely to have significant impact on how data medicine approaches both recognise and then serve them, amplified by the relatively smaller numerical size of these populations and, therefore, compounding inequities and vulnerabilities (Cahill and Makadon 2017). In other terms, without attention to the participation of sexual and gender minorities, data medicine could be 'straightwashed' with deep health equity ramifications. In response to these tensions, scholars have sought out framings of data medicine participation that focus on generalised citizen-like rights to healthcare services, privacy, consent and autonomy (Millard et al. 2018;Petersen et al. 2018;Petrakaki et al. 2021), and there is growing scholarship on the participation of sexuality and gender diverse people in data medicine (Callahan et al. 2014;Deutsch and Buchholz 2014;Dunne et al. 2017). As we will see, MHR is a technology of conferred citizenship and compulsory possessive individualism, effects that need to be considered for their impacts on sexuality and gender diverse individuals and communities.
MHR has implications, also, for the ontological status of sexuality and gender diversity. A common analysis of data medicine would assume that sexuality and gender diversity pre-exist the act of data capture, which may therefore, misrepresent, erase or distort lived experiences, or become a source of exploitation and prejudice. From the standpoint that society and data are mutually affected (Fox and Alldred 2015), MHR inscribes knowledge about sexuality and gender diverse people. It performs significant identity work, including how sexuality and gender diverse individuals see themselves and how they are able to live their lives. Knowledge of sexuality, in particular, has a rich history of entanglements with diverse epistemological practices, including sexology, psychoanalysis and the social survey. These sciences in different ways have helped in the project of liberating sexual subjects from religious and criminal persecution, but have also asserted their own pathologisations and constraints in sexual life (Waites 2005). MHR, situated as it is at the contact point of the state administration of healthcare and sexual and gendered life worlds, is also implicated in this circuit of autonomy and constraint, and not only for sexuality and gender diverse people. These are crucial considerations for any whose lives may be poorly served by the epistemic powers of MHR.
It is reasonable to reflect, then, on how it might be possible to advance the utility of MHR for sexuality and gender diverse people without mobilising its far-reaching threats to autonomy. Drawing on HIV treatment and prevention as an example, Race (2018) has argued that queer counterpublic life has enabled resistance to the hegemonies of biomedical knowledge while also enabling participation in its production and benefits. By shaping what data is collected, for what purposes, and how it is interpreted with what effects, counterpublic health resists the heteronormative, "desexualised", "average person" that biomedical scientific practices can instantiate (Race 2010, unpaginated web document). A central example is 'negotiated safety', which was a survey finding that some gay men did not use condoms in sexual intercourse based on knowledge of their partner's HIV status (Kippax et al. 1993;Kippax and Race 2003). This finding led to controversy as it ran counter to generic public health advice to either avoid penetrative sexual intercourse or use a condom at all times. Interpreted from the position of counterpublic health, the findings led to the insight that gay men were highly reflexive with HIV risk and contributed to a paradigmatic shift in HIV prevention away from universalised approaches towards those based on the various socio-sexual contexts inhabited by diverse gay men. Counterpublic health therefore resists the tendency in some public health science practices to homo-normalise, that is, to empty sexuality and gender diversity of their meaningfulness and transformative potency. It is also important to view counterpublic health as dialogical and ongoing. Race (2018) conceptualises counterpublic health knowledge practices as perpetually and agonistically engaged with the constraining and normalising effects of public health science. With reference to the search for effective responses to HIV, Albury (2018) makes note of the scientists, clinicians, and affected communities allied to advocate for, research, and implement effective treatments. A key element of success for Albury was persistent and creative dialogue to overcome the gaps and limits of scientific knowledge and practice in concert with efforts to resist stigma and prejudice towards people living with HIV and their loved ones. This way of doing bioscience was imbued with a shared "humility" given what was at stake (2018, p. 1332). Counterpublic health, then, is realised in productive dialogue on domination and resistance as the basis for pursuing autonomy and the creative invention of queer life in the face of threat to health and life. In this line of argument, in what follows we consider how it might be possible to have a My Queer Health Record, that is, the pursuit of data-making assemblages that enable autonomy and secure benefits, while also helping to resist the normalising and universalising effects of data medicine and the possible erasure of the basis upon which counterpublic citizenship might be possible.
With reference to the healthcare needs of sexuality and gender diverse people, we seek in this paper to reflect on MHR as a significant instance of data medicine assemblages. The paper, in particular, considers the MHR opt-out moment, in light of salient literature and social theory of data assemblages, bioscience counterpublics, and citizenship. Some news media and policy document examples are also used to help explain the MHR opt-out moment and its implications for sexuality and gender diverse people. Our aim is to advance the conceptual framework for research and practical responses to MHR and the healthcare needs of sexuality and gender diverse people, primarily. In the next section, we provide some necessary detail about the MHR opt-out moment in 2018, how it was justified by the government and its ramifications for sexuality and gender diverse people. Following that, we consider how MHR mobilises a possessive individualism that somewhat disguises its basis in state administration of health systems. We also consider research that demonstrates the ways in which different sexuality and gender diverse people navigate data medicine, carefully managing their encounters with biomedicine and the disclosure of personal information. By drawing, then, on different framings of citizenship-digital, biological, sexual-we consider how MHR could become a tool for generating insight into the relations of sexuality and gender diverse people with state-based electronic patient records and prospects for increased autonomy with regard to data medicine. In the final section we consider the concept of My Queer Health Record in light of our critical framework and make some reflections on what counterpublic approaches to data medicine might look like in the real world.

My Health Record and the right to 'opt out'
2018 saw a significant watershed in the management of MHR: the previous 'opt-in' approach changed to 'opt out' (ADHA 2018), bringing MHR into line with Denmark and Estonia (Nohr et al. 2017), among other nations. The opt-out watershed was linked with public criticism due to possible data security and privacy breaches (Thompson 2018). Mainstream news (Knaus 2019) reported on these potential risks in a wider context of highly publicised data breaches, for example, the unconsented use of Facebook data (Bartholomeusz 2018), reports that private insurance companies would seek access to their customers' MHRs (Khadem 2018), and news in 2019 that the online GP booking platform, HealthEngine, was sued by the Australian Competition and Consumer Commission for trading malpractice and selling patient data to insurance companies (Taylor 2019).
LGBT community media also reported on the risks of MHR: My Health Record is a well intentioned policy but its execution discourages marginalised groups from confidently accessing healthcare. It stokes fears of the forced disclosure of confidential health information-such as the results of sexual health tests and HIV status-which undermine public health outcomes and the individual wellbeing of people in the LGBTI community (Badge 2018).
By February 2019, up to 2.5 million Australians had opted out, indicating either some mistrust of or uncertainty about the MHR system (Knaus 2019). The MHR controversy, coinciding as it did with international public debate about privacy, security and commercialisation of big data in general, indicated an historical juncture for understanding public trust in big data initiatives and their effectiveness.
MHR's opt-out genealogy helps to place these politics into context. MHR is the most recent iteration of several attempts to create an Australian national electronic health record system (Garrety et al. 2016). Previous versions faltered due to software, data management and funding problems and it is estimated that the Australian government has spent billions on these projects since the mid-1990s. MHR's immediately previous incarnation-Personally Controlled Health Record-was seen to have attracted insufficient Australian citizens and clinical practices and was subject to conflict over the ability of individuals to remove data from their records (Garrety et al. 2016). This version was based on citizens 'opting in', which was feared to yield insufficient participation to make the database useful (Duckett 2019). Moreover, the Australian Medical Association argued that patients should not be able to delete data as this might compromise their treatment. These debates imply that the apparent emphasis on patient control of the digital inscription of their medical biography is in a troubled relationship with the interests of biomedicine and the integrity of the data collected. These tensions over who gets to inscribe what into the record can be construed as biopolitical (Lemke 2010): they comprise struggles over how the productive government of the life of the population is to be exercised through the individual patient's self-determination. MHR's opt-out approach is an attempt to harmonise the outward and attractive impression of personal control with the satisfaction of biomedical authority over diagnosis and treatment and the collection of data of optimum value for research and possible commercialisation.
The opt-out procedure also had some empirical support. It was tested in a trial commissioned by the Australian Government and conducted by a private company (Siggins Miller 2016). The central conclusion of the trial was that the opt-out approach would be endorsed by Australians, on the whole. Focus group participants were found to agree that the benefits of MHR outweighed the risks to privacy and confidentiality. Notably for the present discussion, the trial participants did not explore the preferences of people with disclosed sexuality or gender diversity.
Significantly, the opt-out approach for MHR was also justified by an appeal to human rights. The explanatory statement of the opt-out rules issued by the Minister for Health had this to say: The Legislative Instrument engages the following human rights and freedoms: Right to health Article 12(1) of the International Covenant on Economic, Social and Cultural Rights provides for the right to the enjoyment of the highest attainable standard of physical and mental health.
The My Health Record system promotes the right to health by facilitating and improving the sharing of health information between treating healthcare providers, leading to quicker and safer treatment decisions and reducing repetition of information for patients and duplication of tests. Individuals are provided ready access to their own information, empowering them to make informed decisions about their healthcare.
The current opt-in participation arrangements have not effectively encouraged use of My Health Records by individuals and their healthcare providers, and are creating a barrier to achieving the full benefits of the system for individuals. (Minister for Health 2017) This statement invoked the datafication of health as a universal human right, conferring on MHR potent powers over health outcomes that are difficult to refuse. However, the Minister's statement combined the promise of datafication with benefits for the individual (Hoeyer 2019; Mejias and Couldry 2019), a common trope in health technology solutionism (Steinberg 2015), and clouding somewhat the fact that digital technologies like MHR spring from the interests of the state and its investment in the surveillance of its populations (French and Smith 2013). Assessing previous versions of MHR from the point of view of business governance, Garrety et al. (2016), have noted a clash between technological solutionism and the real world complexities of health systems. Data capture technologies have been held up as solutions to the expanding costs of healthcare and medical errors: as a kind of medicine for the ills of healthcare systems. National electronic databases have therefore been laid over health systems-as opposed to arising from within them-and struggled to engage with the complexities of contemporary healthcare. In addition, MHR and other systems like it did not spring from communities of interest-such as sexuality and gender diverse people with complex health needs-but from administrative imperatives and challenges that relate to the production of healthy populations and increased economic efficiency.
Moreover, MHR intersects with other rights. For example, the HIV charity, Living Positive Victoria, advised that, along with benefits for healthcare, people with HIV should be aware that: Under the My Health Record Act 2012, law enforcement agencies can gain access to your health data without the independent oversight of a court or tribunal. If the Australian Digital Health Agency 'reasonably believes that the use or disclosure is reasonably necessary' in the prevention, detection, investigation, or prosecution of criminal offences, breaches of the law or improper conduct and in "the protection of public revenue" (e.g. taxes), your data can be shared to any law enforcement agencies that request it (Living Positive Victoria 2018).
This statement put forward opt out as a consideration for the individual to reflect on for themselves, underlining the biopolitical nature of the decision. The sex worker charity, Scarlet Alliance, produced an information sheet that explained the operation of MHR in detail and its implications for people with a history of sex work and related healthcare. The charity explained for the reader that: Your MHR record is owned by the federal government. Once a MHR is created and data is uploaded onto your MHR, it can never be completely deleted. You can, however, 'deactivate' data which means that the 'deactivated' data cannot be seen by healthcare providers but will be retained in the centralised MHR database. For sex workers, if you ever disclose your sex work or HIV status, or drug use and it is uploaded onto your MHR, it can never be completely deleted.
This advice provided insight into how MHR might impact in the lives, work and health of sex workers. It served to mediate the relationship between sex work and state, offering the reader the standpoint of someone with the right to protect their interests. The document went on to explain how consent to use of data would be undertaken in MHR and the related legal ramifications: Currently health information stored in medical files can only be accessed by a third party provided they gain court approval. The MHR Act 2012 (Cth) allows third parties, such as the department of immigration, law enforcement and insurance providers, to access MHR data without the MHR holder's consent or court approval in a range of circumstances. As a result, the MHR Act 2012 (Cth) effectively lowers existing privacy health protections.
These statements explain that the right to the benefits that may come from participating in MHR may disturb other rights, for example, privacy, freedom from coercion and access to material resources. The principle of right to health on which MHR is based is, therefore, absolute and deracinated, separated from real world sexuality and gender diversities that impinge on health. Like heteronormative cultures and institutions that erase sexuality and gender difference, MHR traffics database normativity, predicated as it is on a universalised subject that pertains to all, but therefore no-one in particular. In this sense, MHR instantiates symbolic violence since it fails to conceptualise the rights to autonomy and freedom from prejudice of people in particular social circumstances. Hoffman (2020) has argued that the contemporary turn to 'social inclusion' in public policy on database surveillance is a form of symbolic violence since it incorporates diversity without addressing the social structures that produce diversity and its related inequities. Hoffman's analysis cautions against glib attempts to include sexuality and gender diverse people in MHR, or other minority groups, and lends support to the view that hailing of all to a universalised right to health in the form of MHR, effectively erases the diversity that constitutes social worlds and health outcomes.
These clashes of the universal and particular are significant because stigma and discrimination remain challenges for the health and wellbeing of LGBT people (Collier 2012). HIV stigma mediates psychosocial wellbeing and health outcomes among people with HIV (Brener et al. 2020). Trans and gender diverse individuals report high levels of prejudice that shape interactions with healthcare providers (Sequeira et al. 2020). Male and trans sex workers (Brookfield et al. 2020) report high levels of prejudice that reduce their access to health services. Moreover, sexuality and gender diverse individuals come from various cultural backgrounds that may influence how they think, feel and act on opportunities like MHR. Individuals of different generations may have different life histories with stigma and prejudice and therefore have developed particular strategies for disclosing personal information to others. The meanings of privacy, what counts as sensitive, and how and for whom disclosure ought to be conducted, are likely to be imbued with a range of meanings and risks about which the designers and managers of health data technologies may not be aware or may minimise as less significant than achieving the benefits of integrated health systems. Unwanted disclosure and exposure through MHR and related technologies may re-inscribe otherness and lack of autonomy for sexuality and gender minorities and therefore deepen the reluctance of some to present for healthcare or, at least, to be fully open about their health needs and preferences (Adams et al. 2013). These imperatives to be open to sharing personal information through digital systems may also inspire and/or deepen disaffection with healthcare provision, compounding negative emotions attached to ill-health and minority stress (Collier 2012).
Importantly, MHR, drawing as it does on rights discourse, is an instance of state conferred and therefore arbitrary citizenship rights. Writing about the big data developments in healthcare in Denmark, Schou and Mjelholt (2018) have noted that digital citizenship has made several transitions over the last 20 years. Early notions of digital citizenship centred on how individuals should conduct themselves as good citizens online, faced as they were with new and rapidly emerging ways of connecting and representing selves and lives. Schou and Mjelholt argued that more recently digital citizenship is not only a question of online conduct and the mediation of political engagement, but of political beingness in its own right. They note that in Denmark, for example, national citizenship depends on digital citizenship. From 2014, all citizens over the age of 15 were required to interact with health and human services via digital means. As they note, "being digital became the default mode of citizenship, as all citizens now had to communicate and interact through digital means" (p. 515). Bridle (2016) has taken digital citizenship a step further to propose that citizenship is performed in data systems, for example, without a digital trace of one's identity in relation to a particular place, one may not exist as a citizen of any place. These dynamics imply that sexuality and gender diverse individuals, along with people in general, will be increasingly required to navigate their access to state resources through digital systems, with attendant implications for disclosure of personal information.
MHR also differs from international systems in relation to its approach to consent. Staying in MHR is taken as a form of 'standing consent' for third party uses of data, not all of which can be anticipated (Mendelson 2018). This consent approach is seen as weaker than more 'granular' international approaches that can accommodate future healthcare developments and therefore are able promote the rights of individual citizens over their privacy and uses of data (Mendelson 2018). Because MHR consent differs from approaches taken internationally (Mendelson 2018), it may lead to undesirable uses of data for individuals who travel between health systems. For example, individuals may not want their HIV serostatus or gender affirmation histories disclosed when they travel across borders.

Compulsory possessive individualism
In addition to MHR's quality as conferred citizenship technology, it also inscribes the notion that the database is owned by the citizen, something that is somewhat undermined by the co-existing expectation that citizens should participate in the curation of the individual record and how the data record is created by multiple parties. This hailing of personal control comes into some contradiction with the value ascribed to autonomy and agency for many sexuality and gender diverse individuals with regard to the places and means through which personal information is shared, both to affirm identities which remain socially marginalised, and to minimise stigma and discrimination in institutional and community settings.
The distinctive name, 'My Health Record', suggests that the technology provides an opportunity for the patient to assert control over their health, employing the language of possessive individualism. This deliberate framing invites consumers to participate in a mode of citizenly agency in healthcare and beyond. MHR reflects the use of the possessive pronoun in other digital health data bases. Japan introduced 'My Hospital Everywhere' in 2010 (Flaumenhaft and Ben-Assuli 2018). 'Patients like me' and 'Digital me' are patient-run databases that offer the same invitation to ownership and self-management. Another Australian web portal, used for access to social security, is called 'MyGov.au'. These websites hail consumers into active citizenship, but not un-provisionally, as we will see. Komesaroff and Kerridge (2018) have noted that MHR is put forward as the property of the patient, as if they author and authorise their own medical biography and healthcare. They note: A patient's entire life, at least at the point where he or she came into contact with health professionals, was reconceived as an assemblage of data, a list of diagnoses, prescribed drugs, allergies and personal proclivities and idiosyncrasies. In addition, the collection of data -the record -became not the shared knowledge of a doctor and a patient in an intimate conversation, but the property of the patient, subject to, and under threat of violation by, malign external parties (Komesaroff andKerridge 2018, p. 1292).
As Komesaroff and Kerridge show, MHR assembles authors and audiences in ways that alter roles and powers concerning who gets to write and read about an individual's medical biography. The individual patient narrative is in effect assembled by multiple actors in sometimes faceless relations with the patient and each other, and these narrative fragments are witnessed and responded to by audiences for the most part invisible to the author. MHR is then strictly a multi-authored text, with attendant complexities and meanings. Komesaroff and Kerridge also point out that the idea of a patient record is indeed quite an ancient one and that, up until recently, was seen as a tool for the clinician to reflect on how they provided care, to share with others to promote their discipline, and to protect them from the legal ramifications of diagnostic and treatment failures. In that form, the patient record was never 'for' the patient in a direct sense.
Given that electronic patient records are attractive sources of data for data medicine, the poly-authorship of patient records is thrown into another light. The underlying technological solutionism of data medicine and its associated quest for the datafication of life implies that it is a somewhat tacit force in the shaping of the patient record. Datafication has the status of a natural and bountiful resource that masks its ontological status as abstracted and coded meaning that gains value, not for the individual and their doctor, but when it is pooled and submitted to 'data mining' used to inform the development of predictive algorithms (Mejias and Couldry 2019). MHR is, then, shaped by data medicine for its own needs, arguably influencing what data is collected and how and therefore the knowledge systems that pertain to health. MHR, then, represents a far-reaching reorganisation of medical authority over diagnosis and treatment, lifted out of the workplace of the clinician and their professional conduct and practical knowledge, crafted as a mode of patient empowerment, but also networked and pooled to enable research and analysis. Through its apparent focus on the record as 'belonging' to the patient, MHR decentres medical authority over healthcare, though as we have seen, there is also some basis for doubt that MHR is owned by anyone in particular. Underlining this point, there is some evidence that patients do not make much use of their records. A review of electronic patient record systems in Denmark, Estonia and Australia found that Danish citizens were more likely to use their electronic records than those in Estonia and Australia (Nohr et al. 2017), but that in all examples, for 2015 the proportion of registered users who had logged on to their records ranged between 0.05% and just under 5%. An Australian survey of LGBT people found that 4%, approximately, reported that they had accessed MHR regularly in the past year (Newman et al. 2020). MHR and systems like it can thus be construed as relying on possessive individualism to enable consent for the collection and pooling of data. It implies that the citizen is able to also determine how their data is used and by whom and that they are ultimately the sole beneficiary, but this does not appear to be the case.

Data medicine and reflexivity
It is also important to recognise how sexuality and gender diverse people reflexively manage knowledge about themselves in clinical and online settings, in an effort to shape health outcomes for themselves while reducing stigma and mistaken assumptions on the part of people with whom they interact. In clinical settings, it is estimated that only half of LGBT people in the UK have disclosed their sexual identity to their GP (Brooks et al. 2018). Lesbian and bisexual women reported in focus groups in the USA that their healthcare was compromised by providers' lack of understanding of their sexual identities and practices (LaVaccare et al. 2018). Just under 50% of transgender youth surveyed in the USA reported that they had purposefully avoided disclosure in healthcare settings outside of gender clinics (Sequeira et al. 2020). A qualitative meta-analysis showed that avoidance of social stigma reduced the engagement of transgender and male sex workers with sexual health screening, treatment and support services (Brookfield et al. 2020). Some trans people are open about their gender history in all aspects of their professional and personal lives, while others are extremely concerned about this information becoming known by anyone other than a very small number of trusted providers (Newman et al. 2021). Trans people have been found to value data management practices that avert misgendering in healthcare settings and best practice approaches are emerging, but these are typically a balance between robust information to guide practice and very careful protection of privacies (Deutsch and Buchholz 2014;Dunne et al. 2017). In online environments, digital technology users exercise discretion over personal information pertaining to sexuality and health status (Davis 2009). For example, some gay men may disclose their HIV serostatus in dating apps, while others choose not to do so (Davis and Flowers 2014;Davis et al. 2016). Much can be learned, then, from how sexuality and gender diverse people already manage their lives in clinical settings and through digital media, practices that potentially intersect in the form of MHR and related digital health technologies.
Such crafted self-reflexivity is important to understand because MHR has the potential to be an important source of knowledge about the healthcare needs of sexuality and gender diverse people with complex health needs. MHR has great potential for revealing hitherto hidden patterns of health outcomes in populations and supplying greater nuance than has previously been available (Chen et al. 2016). For minority groups, participation in MHR is necessary to ensure that biomedical knowledge arising through data medicine is as inclusive and nuanced as possible (Cruz 2017). Without minority participation, it is conceivable that health benefits will accrue to those who fit population norms, while those who do not will be left behind (Epstein 2007), a kind of straightwashing of knowledge.
Moreover, data medicine approaches are in some tension with reflexivity on the part of users. The 2012 act governing MHR reveals the intention to: overcome the fragmentation of health data and increase its availability and quality; reduce medical errors and duplication; and improve coordination and the "quality of healthcare provided to healthcare recipients" (Mendelson and Wolf 2016, p. 292). This last aim is key to the success of public investment in MHR and implies that the subjective experience of consumers is within its remit. Actually how MHR will help to improve the quality of healthcare in the eyes of service users is not clear.
There is also no sense of how MHR data assemblages might impinge on subjective experience. The recording of medical events over time which is encouraged by MHR may flow back to the patient's experience of themselves, providing them with new ways of looking at their health and self-identity (Tieu et al. 2017). There is a tension here for trans people in particular, for whom there are often quite distinct stages in life history that are associated with different ways in which the self becomes datafied, and this creates anxieties about the assumption of a linear life course narrative that simply does not apply to many. MHR may help to scaffold memory and therefore life histories, giving individuals access to unprecedented datafied hindsight (Freeman 2010), much like a Facebook timeline. These effects may have ramifications for the impact of MHR and similar technologies on lived experience and options for the betterment of health and wellbeing. Absolute datafication of patients' medical lives might shape disclosures, the seeking of healthcare, and compound the publicness of stigma-producing diagnoses and treatment outcomes (Newman et al. 2020). Presently MHR is conceptualised as the technological solution through which health quality will be pursued, but there is little consideration of how MHR data assemblages in and of themselves might contribute to health and wellbeing, particularly for people with complex health needs and considering high risk disclosures and exposures.

Which citizenship?
MHR, then, mediates the relationships between the state and its citizens. For sexuality and gender diverse individuals, MHR raises additional citizen-like questions, including reflection on what sensitive data ought to be recorded and for whom it should be made available, particularly for issues that some may wish to keep private. These questions are salient for those who opted out of MHR, since refusal is an active choice of citizenly reflexivity. Even among those who did not take action through complacency or for some other reason, their lack of engagement gives rise to a kind of citizenship by default. Moreover, these challenges and imperatives vary over the lifecourse and in the advent of health episodes, and also transform as healthcare systems themselves travel through economic, political, scientific, and technological changes. Against this backdrop, it becomes important to focus on how MHR can be optimised for sexuality and gender diverse people in ways that move beyond the conferral of citizenship through the right to opt out or by default. Some possible ways forward can be found in alternative citizenship framings that elucidate the individual's rights to consent, autonomy and privacy and that are explicit about power and diversity. In what follows, therefore, we consider how MHR citizenship could be nuanced in light of the expansion of opportunities and complexities that flow from framings of digital, biological, and sexual citizenship.
Digital citizenship has been conceptualised as the production of civic societies in digital worlds (Couldry et al. 2014;Mossberger and Tolbert 2021). These approaches are helpful because they draw attention to constraints on what individuals are able to do, the production of relationships and communities. Digital citizenship for sexuality and gender diverse people supports approaches to data medicine that accommodate diversity and counteract the tendency to limit autonomy. For MHR, this might be reflected in increased capacity of the individual to determine what parts of their record are available to whom and for what purposes, though as we have seen, this encoding would not be without tensions for clinicians and data medicine in general.
In political inquiry, digital citizenship helps to conceptualise the social movements that have drawn on what digital media make possible (Couldry et al. 2014). The kinds of social networking and collective action that are possible in digital society have been understood as claims on citizenship rights and movements that inspire political and social transformation. MHR and similar forms of data medicine, however, do not spring from grassroots collective action on matters of civic society, freedom and autonomy. As we have seen, MHR is a top-down, bureaucratic response to the challenges of governing health and related opportunities for the advancement of data medicine. Moreover, MHR, through possessive individualism, constructs citizens as individual clients of the state, sidestepping collectivism and patient advocacy (Epstein 2003). Collective action and the counterpublics that can form around shared goals are potentially subject to weakening or even erasure. The effects of this dynamic were apparent in the ways in which LGBT patient advocacy groups responded to the opt-out moment, navigating as they did the delicate politics of advising their constituents and sustaining effective relationships with government funders of their work. Sexuality and gender diverse people have hitherto relied on community-based support for their health, especially those groups such as trans people and sex workers who need strong political advocacy to secure resources and sensitive services. MHR may therefore serve to complicate or even erode communities of interest. Relatedly, patient advocacy groups face the challenges of reorienting to the new political conditions that favour top-down, individualised client-state relations. Patient advocacy may have to address the digital enablement of its constituents in tandem with political advocacy at the highest levels of government.
MHR is also a health technology that hybridises digital citizenship with biological citizenship (Petrakaki et al. 2021). Petryna (2003) linked this political framing of citizenship with health to develop the notion of biological citizenship. This concept was founded on the plight of individuals who share a biological characteristic, in the case she developed, survivors of the Chernobyl disaster and the collective action that was required to assert rights to healthcare in the long term. Early forms of community responses to HIV and treatment advocacy can be understood as examples of biological citizenship (Epstein 1996). In particular, shifting community responses to the introduction of the HIV test in the 1980s, the implications of effective treatments for HIV prevention, and the expansion of treatment access are all central examples. Declarations of the rights of people with HIV (Enoch and Piot 2017) are expressions of biological citizenship, which have helped to secure the place of HIV charities and advocacy in the public health response to the pandemic. Shared biological citizenship is no automatic guarantee of inclusive politics, however. As Epstein (2007) has shown, the community response to HIV has always been nuanced by privilege, whereby the health priorities of the already advantaged are advanced while leaving behind those who are most often disadvantaged. In other terms, individuals affected by HIV from socially advantaged groups are more likely to be 'at the table' when significant decisions are made. MHR's engagements with people from sexuality and gender diverse backgrounds needs to be conducted in ways that avoid the reinforcement of privilege.
Sexual citizenship is also apposite for conceptualising how MHR can serve the healthcare needs of sexuality and gender diverse people, in part because it is heavily infused by the concept of intersectionality (Richardson 2017). This framing of citizenship is concerned with the rights of individuals to freely experience sexual relationships without coercion and threat to health, freedom of expression and action, and the responsibility of economic and social institutions to support sexual citizenship. Sexual citizenship is used to help organise gender equity and sexual health policy, education and communications. It has been articulated as a way to bring minority communities into digital citizenship and draws on the extensive literature that has documented the inventive ways in which minorities shape their social worlds online (Cover 2018). An important feature of sexual citizenship is that it draws attention to citizenship hierarchies and partial citizenship, articulated around heteronormativity (Hanckel and Morris 2014). Sex worker rights, for example, are partial in the sense that their working lives are protected to some extent, but not always in ways that enhance their autonomy (Langdridge and Parchev 2018). Sexual citizenship is useful for revealing blind spots and inequities around sexual and gender identities and practices. It is therefore an important resource for thinking critically about MHR and for shaping the platform design and policy environment so that it works for all as optimally as possible.
Taken together, these citizenship framings suggest why the naming and language of MHR resorts to possessive individualism. Possessive individualism is perlocutionary in the sense that it inspires a sense of ownership that is consistent with framings of citizenship that give emphasis to self-determination. Without the outward appearance of a personally-owned health record, the database would look too much like a state-imposed requirement. But these other framings of citizenship also indicate how MHR and similar technologies may fall short of extending autonomy, control and protecting privacy in the interests of sexuality and gender diverse people in particular. Moreover, these other ways of conceptualising how citizens engage with digital life more generally, their biomedical identities and sexual and gender mores, co-exist with the modes of citizenship afforded by MHR. This life-world plurality implies that MHR users bring their experiences and expectations into data medicine, including their awareness of how to manage themselves in social media and beyond. There are opportunities, then, for opening up data medicine to competing framings of citizenship to ensure that it is useful for individuals and to optimise participation. Because these framings of citizenship help to problematise state conferred rights as they are articulated though data assemblages like MHR, they contribute to counterpublic dialogues on healthcare for sexuality and gender diverse people. Citizenship helps to enlarge counterpublic resistance to the erasing and normalising effects of public health science by examining the benefits and injuries that come with state conferred rights materialised in MHR and similar digital-governmental assemblages. Citizenship also highlights how the example of MHR accentuates an individualised relationship between the citizen and the state, complicating the basis for collectivised, counterpublic action on autonomy.

My Queer Health Record?
Sexuality and gender diverse people are somewhat akin to 'canaries in the datamine'. Their experiences of MHR, views about digital health care, and the practical solutions they may suggest, are likely to illuminate how social norms, identity politics, social stigma and prejudicial behaviour, and complex health considerations shape participation and therefore how data medicine approaches could be enhanced for better health and wellbeing. Such insights may help to further the quality of MHR for sexuality and gender diverse people and how it could be made more useful is likely to have resonance for other groups. For example, people with rare health conditions may be heavy users of health services and will therefore have an investment in how services like MHR can accommodate them and their particular needs. Parents caring for children with disabilities, or those providing care for the aged may also have different needs, concerns and views on how the technology could be 'my health record'.
MHR might look very different if it was predicated on framings of citizenship that resist universalism and deracination. As things stand, MHR represents a state-led bureaucratic agenda to advance effectiveness, efficiency and safety combined with wider interest in furthering the benefits and commercial opportunities of data medicine. The media controversy that the MHR roll-out faced, and the 'fix' afforded by the opt-out solution are in this sense effects of the technology's basis in state administration. Building on the analysis we have offered, development of MHR could embrace its assemblage character and therefore consider its human and non-human actants, including but not limited to patients, carers, medical practitioners, symptoms, prescriptions, referrals, coding schemes, software and hardware. Given that MHR entangles data and social worlds, an alternative route for the development would be to found it on framings of citizenship that embrace diversity and life-world complexity. For example, practical efforts might include the expanded capacity of community-based health advocacy in response to MHR and data medicine in general. A focus could be the creation of a shared and nuanced discourse on the benefits and drawbacks of data medicine for sexuality and gender diverse people and the invention of new kinds of health advocacy. New skills and activities might be warranted, for instance, in the form of 'data brokers' (Newman et al. 2020) who can assist individuals to effectively participate in MHR. On this basis, it might be possible to evolve MHR in ways that benefit individuals and manage any possible impacts for their citizenship status and prejudice. Adjusting the design of MHR and how it is used through dialogue with affected communities may generate novel solutions to healthcare challenges. There may be benefits, too, in the incorporation of the 'voice' of the individual into their records. The Swedish electronic patient record Journalen (Armstrong 2017), for example, included provision for individuals to include their own comments about their experiences in their records, promoting a sense of ownership and problematising what counts as data in healthcare. As a minimum standard, data medicine citizenship intersected with the legal, privacy, and medical status of different groups need to be addressed with meaningful and robust engagement. Issues of consent, privacy and fear of prejudice are different for different groups, for example, gay men with HIV, trans people, and sex workers (Newman et al. 2020). Each of these constituent groups are likely to have specific data medicine wants and needs, indicating the need for a more granular, community specific approach to MHR and data medicine in general. 'My Queer Health Record' is our way of signifying this aspiration for engaged data medicine, more in keeping we argue with health services that are useful and meaningful for individuals who are otherwise poorly served.
It could be said, however, that the tensions embodied in MHR cannot be overcome and that the aspiration for My Queer Health Record, though laudable, is esoteric. Because it emanates from the state's needs to administer healthcare, participation in MHR to address straightwashing invites homonormalisation and a related dynamic of furthering the interests of privileged groups and accentuating the exclusion of others. Drawing on counterpublic health, we argue that dialogues on these tensions are possible and productive, in the ways we have outlined. Moreover, data medicine is only one example of health care challenges that raise deep and enduring tensions over identity, autonomy and harm for sexuality and gender diverse people. The HIV pandemic, for example, confronted individuals and communities with myriad challenges to their health and social worlds, impacts that were negotiated through new alliances of affected communities, clinicians and scientists and therefore modes of counterpublic health (Albury 2018;Race 2018). Like HIV for some sexuality and gender diverse people, data medicine will remain a feature of health care and is likely to shift and grow in importance. It is a public health phenomenon that calls on communities to take action to ensure that the limits and drawbacks of data medicine are understood, harms are mitigated and benefits furthered and distributed equitably. The intertwined histories of sexuality, gender and science show that continued attention to these matters has, gradually, yielded benefits for sexuality and gender diverse people, in the past, and there is no reason to presume that this history cannot propel us into a more equitable future. 'My Health Record' in this sense is itself an invitation for an enlarged project of democratic data assemblages in healthcare and beyond.
Significantly, too, MHR is likely to be only one important case of data medicine for sexuality and gender diverse people. Data medicine is often represented as a technological horizon, since the delivery of its promise is continually delayed with each iteration of its development (Hoeyer 2019), much like MHR has itself undergone more than a few incarnations since the 1990s. The field is imbued with technological solutionism that is always superseding itself as new answers are considered to the problems of over stretched public health systems and new forms of knowledge are generated through datafication of social worlds. Other propositions are likely to arise that may make MHR seem ordinary or even redundant. This tendency in the field indicates that it is the underlying politics of data citizenship that need to be examined, debated and modified to prepare for data medicine futures.
Our analysis of the case of MHR shows how solutions have tended to prioritise technological fixes, a confected universal citizen and the politics of possessive individualism. It is likely then that MHR and data medicine in general will not succeed in terms of the interests and needs of sexuality and gender diverse people. Unless, that is, the lived realities of sexuality and gender diversity, and indeed life worlds in general, are considered first and foremost in the search for what data medicine can do.