Jon Cornwall, "What Should Happen to Our Medical Records When We Die?"
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April 3, 2019 Digital innovation is transforming health care, and the amount of digital health care data being generated will likely have increasing research utility over time. Despite the seemingly logical and inevitable application of health care data from deceased persons for research and health care both now and in the future, the issue of how best to manage posthumous medical records is currently unclear, including elements of resource governance, issues of law, and infrastructural challenges. This presentation explored current issues surrounding how to manage the medical records of the dead, integrating evidence from the field of body donation to inform and guide the discussion on the utilisation of posthumous medical information. It also delivered results from a year-long study on posthumous health care data utility that explored the views of the general population on the use of posthumous medical records, which showed a centrally collated and government-governed resource of posthumous health care data was almost universally supported, with varying caveats around how such a resource should be utilized. The Digital Health @ Harvard series features speakers from Harvard as well as collaborators and colleagues from other institutions who research the intersection between health and digital technology. The series is cosponsored by the Berkman Klein Center for Internet & Society at Harvard University and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. The goal of the series is to discuss ongoing research in this research area, share new developments, identify opportunities for collaboration, and explore the digital health ecosystem more generally. Learn more on the website: https://petrieflom.law.harvard.edu/events/details/digital-health-harvard-april-2019
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Jon Cornwall, "What Should Happen to Our Medical Records When We Die?"
- 2. 7,700,000,000 Fact: the number of posthumous healthcare records will increase over time
- 3. What do I do? Posthumous Human Assets, New Technology
- 4. Advocate for science and community
- 5. The Brave New World – where data use and medicine is heading Parallels with body donation Study on posthumous medical records Where to from here?
- 6. Why care about posthumous digital medical records? Rich data resource, increasing in size Facilitation of dynamic and equitable healthcare delivery (globally) Increase in uptake of -omic technology Digitization and E(lectronic)-mortality • Value / Commercialization/ Ease of distribution • Relationships between government / institutions / community extremely important Why care now? Increased risk to social / community healthcare frameworks / relationships
- 7. Local context…. • 4 million people; 6 major ‘cities’ (Auckland 1.4 million) • 32 different district health boards • 74% European NZ; 15% Maori; 12% Asian
- 8. The Future Use of Digital Medical Records PLUS • Inter-generational analyses (e.g. genetics, epigenetics) • Real-time feedback into healthcare delivery of descendants (genetics / pharmacogenomics / -omics) • ‘Personalised’ medicine and healthcare Problem – difficulty to perform well with anonymized data • All current uses of anonymized medical records (healthcare management, audit of process / disease) [CP] Problem – ‘new’ definitions of ownership and privacy
- 9. Big health data is everywhere 1.3 million pop., ‘The most advanced digital society in the world’
- 10. Big health data is everywhere 1.3 million pop., ‘The most advanced digital society in the world’
- 11. Big health data is everywhere 1.3 million pop., ‘The most advanced digital society in the world’
- 12. Big health data is everywhere 1.3 million pop., ‘The most advanced digital society in the world’
- 13. Big health data is everywhere 1.3 million pop., ‘The most advanced digital society in the world’
- 19. Control?
- 20. Control?
- 21. Control?
- 22. Control?
- 23. Control?
- 24. Grand Moff Tarkin - Rogue One (2016) Who’s interested in the data of the dead?
- 25. Grand Moff Tarkin - Rogue One (2016) Who’s interested in the data of the dead?
- 26. Grand Moff Tarkin - Rogue One (2016) Who’s interested in the data of the dead?
- 27. Grand Moff Tarkin - Rogue One (2016) Who’s interested in the data of the dead?
- 29. https://hu-manity.co/hu-manity-co-launches-worlds-first-consumer-app-empowering-people-to-claim-their-data-as-property/ Campaigning for 31st Human Right for individuals to claim their data as property (Universal Declaration of Human Rights – United Nations 1948)
- 31. Minion DNA sequencer MIT Tech Review, 2018
- 34. (2013)
- 35. Potential issues with medical data Concern over mass-data use without consent What is becoming clear… individuals want the right to choose what happens to their data Governments are promoting personal autonomy and decision-making for personal data use ‘Erosion of trust, risk of discrimination, loss of anonymity’ Erosion of trust National Committee on Vital and Health Statistics. Report to the Secretary of the US Department of Health and Human Services on Enhanced Protections for Uses of Health Data. 2007.
- 36. (Free to download) So where’s the discussion? Evidence? (New Zealand Medical Journal 2017) If there’s no evidence available, where else can we turn?
- 37. Digital technology meets Body donation ‘Digital dead’ Are there other examples / fields?
- 38. Images
- 39. What are the presumptions that people make about whether the use of data is OK? Brighton and Sussex University (UK), since 2004, 10% donors per year say ‘no’ to acquisition of any images Gigi Hadid https://www.facebook.com/officialgigihadid/
- 40. Images
- 42. 3D printing • Significance of local usage of prints • Challenges created - 3D prints as disposable property? • Importance of retaining the human side to anatomy • Unacceptability of 3D prints from unclaimed bodies • [Commercialisation contravenes IFAA guidelines] “…the scientific tenor of 3D processes represents a move away from the human person, so that efforts are required to prevent them accentuating depersonalization and commodification.” Gareth Jones, 2019
- 43. Sensitive Collections Provenance? Unethical acquisition? Existing data collections?
- 44. Genomics Family history? Incidental findings? Family interests?
- 45. E-mortal asset (could potentially last forever) Unconsented use / Misuse / Exploitation There are common issues around: Acquisition, storage, utilization, distribution, destruction Depersonalization, Commercialization Incidental findings, family interests (exome analysis) So where are the problems? Erosion of trust Altruistic, beneficent motivations of donor population
- 46. So – what do we do with the digital medical records of the deceased?
- 47. ‘Rest in Peace’ or ‘Research In Perpetuity?’ What should be done with New Zealand’s Posthumous Medical Records? Questions: What are public perceptions surrounding the utilization of posthumous, digital medical records in New Zealand? What should be done with them, if anything? What would such a system look like? How should it be governed? What laws should apply?
- 48. Law in New Zealand dictates medical records must be held for a minimum of 10 years after death Section 2 of the Privacy Act 1993 defines an ‘individual' as "a natural person, other than a deceased natural person”, and then defines "personal information” as "information about an identifiable individual” Ethics approval is required for access to identifiable information. Acquiring access to ‘non-identifiable’ information is less problematic, though a little controversial (tech company ‘audit’) What governance currently exists regarding posthumous medical records in New Zealand?
- 49. Methods Age groups split into six different age-groups; 18-65+ years One-hour focus groups (up to six people) Recorded, transcribed, thematically analysed Focused preamble and background Questions focused on posthumous healthcare data: utility, governance, law Family access; Would your health accessing behavior change if you knew your data was going to be used; Data holding periods; Commercialisation; Use – by whom, for what purpose? How will it be stored? Governed? Managed?
- 50. Results Participants: 63 (5 identified as Maori); Twelve FG / hours of transcribed focus groups Common themes • Family access • Effect on current health seeking behavior • Anonymity • Commercialisation (including access by insurance companies) • Consent • Data holding period • Governance (shape and form) • Use (by and for whom) • Ethinicity specific data • General observations
- 51. Family access There Should be an External Decision-Maker “I mean that’s my biggest concern, if this goes forward who’s the guardian, who’s the gatekeeper?” “Because it's almost like someone has to be there to advocate for the dead.” Recognition of Complicated Family Situations and Privacy “At a personal level, I wouldn’t mind, but I can see the situations when it would be a problem for a lot of people.” Awareness of Incidental Findings “Yeah, and some of your family will wanna know and some won’t, you know, and then do the ones that know, how do they share with the ones that don’t, you know?”
- 52. Effect on Health Seeking Behaviour While Alive “Yeah, I think it has the potential to change behaviour, make someone subconsciously change their behaviour.” “I go in expecting it to be private and confidential. I’d be looking at it quite differently. I might use it the same amount, but it would definitely change my views on how to use it and things.” “It’s the easiest question you’ve asked me. It would be no.” Ethnic / cultural variation - Maori consider this topic differently
- 53. Anonymity Concern Over Hacking In Relation to Cross-Referencing Data In Relation to Family “But like personal things, like STDs or like abortions and stuff like that, I’d wanna be anonymous. Like, your family doesn’t even know about that sort of stuff, you know?” No Absolute Rule for Anonymity “It would have to be a choice.” Privacy Does Not Exist “I think the more that you use software and the internet, stuff like that, the more probably sophisticated you’ve become in terms of understanding that there really is no anonymity. There’s no privacy.”
- 54. Commercialisation Distinction Between the Data and Results of Data “I think maybe not so much commercialising the data itself…commercialising the results from that data might be something more practical and more useful anyway.” Family Profiting From Data is Acceptable “I wouldn’t mind if my children profited off it, yeah. I would trust that they would use their best judgement to use it wisely.” Profit Going to NZ is Acceptable Profit is Acceptable if it Provides Benefit “If it improves people’s health, improves other things, it has a benefit, and it’s not solely about making money for the pharmaceutical company, then there surely should be allowed that, not open slather.” General agreement: commercial use ok if there was a benefit, Including: health of future generations; benefits derived from drugs; collective goodwill; it is a logical outcome for the data to be used for research which often means commercialisation Unease re. commericalisation: gut-feeling against exploitation Shkreli
- 55. Access by Insurance Companies “I think they’re all evil, very, very evil.” Potential for Discrimination by Insurance Companies “……would create societal inequities.” “I don’t think they should access my data for my great great grandson who wants insurance. They might say, oh but your great great grandfather had colorectal cancer, we’ll have to up your fees. That’s where it goes wrong.” Keeping the Data Indefinitely is Acceptable “I would be happy for my records, personally, to be held in perpetuity.” “It would bother me if it wasn't. I think this is a long game.” Holding period for data
- 56. Consent Regarding Opt In/Opt Out System “If personal data, for me, isn’t going to be used in a way that’s equitable and accessible to all, then I think we should have the ability to opt in or opt out.” In Favour of Opt In “I prefer opt in, to be honest with you. I can see the point in having a much larger data set, and I can see the importance of that. But it feels like just another breach of interpersonal trust for me.” In Favour of Opt Out “And in the interest of collecting as much as possible but still giving people choice, I feel like an opt out system would be more beneficial than an opt in where you’re just not going to get enough people.” “I think opt out because I think it has the potential to create a larger database for the greater good.”
- 57. Government Should Control the Data “I think it needs to be a government ... I don't think it can be any health board or university …. But I think it should be a taxpayer funded government initiative that holds the database in the same way that they have a database of car registration information or whatever.” Storage of Data Overseas is Acceptable “I don’t care, as long as it's not accessible by Donald Trump.” Storage Should be in NZ “I think also New Zealanders possibly who are dubious about the system or about, you know, the people who are more likely to opt out of doing this would feel a lot more comfortable. I’m just thinking of like my grandparents, they have no idea what the internet is. Governance
- 58. Difficulties of Controlling the Data “The aspect of control is so vital to this whole thing working or not. Who controls the data, and how’s it shifted around, how’s it accessed, free or otherwise.” “The question would be how do you control it? You either release it or you don’t release it.” Centralised System “If the data's going to be accessible and pieces of information are going to be comparable across a large section of the population….then it has to be catalogued and stored and accessible in a uniform way and not through different agencies just happen to have it stored.” Two main issues: concern over hacking; the need for one system to create a streamlined framework for data (Governance cont.)
- 59. Use Benefit NZers “I’d like to think that the primary benefit from my healthcare data if I agreed it to be shared, I would like to think that the primary benefit would be for New Zealanders. And I would like to think that the secondary benefit might be for the greater good.” Worldwide Benefit “I think information sharing is pretty important around the world, because if we got a larger pool of results there would be a higher chance of finding … things that we’re looking for. So being able to share the data with others would be quite key in terms of success. And New Zealand may not have all the resources required, or all the facilities or expertise to handle everything. So international co-operation would be quite important in this aspect as well.”
- 60. Ethnicity specific data Healthcare data are taonga (treasure) Maori governance of such data is essential May wish to not have data stored due to beliefs surrounding links with spirit [Feeds in to current data sovereignty work]
- 61. General Observations Concern Over Exploitation “I think it possibly comes back to you’ve gotta make sure that whoever’s storing this data has a high ethics type content and that it’s, it’s only released … in the greater good.” The Importance of the Topic “I think it's really important. I know a lot of corporates and other New Zealand companies are talking big-time now about digital data. So, it needs to be at the forefront of people’s mind about what is actually going to happen to this information … And with research and development being so important, especially for our country, it is very crucial that we do actually have some parameters around the laws for how people are going to use this information. Respect for the Data “It’s also about having respect for posthumous data, like if someone died it would be having respect to that person by using that data appropriately.”
- 62. Main Outcomes (1 of 2) What is supported: a centralized database of posthumous healthcare records in a single repository Primarily held and run in NZ for the benefit of NZers (secondarily humankind / worldwide benefit) Managed / overseen by government healthcare department, not hospital or private company (Semi-) Anonymised use of data, with ability to feed back information of relevance to descendants into healthcare system Not comfortable with data being sold Could see data used for downstream commercial gain (e.g. pharmaceutical) BUT against ‘blatant exploitation’
- 63. Community, NZ strong themes. Core elements include beneficence, altruism. Some positions varied across ages Governance: by a board or group that would oversee utilization on behalf of NZers Consent – split on opt out, opt in (vis a vis current) Law: in general, healthcare data should held in perpetuity Law: family access should be allowed and facilitated where relevant, but mediated and not open Main Outcomes (2 of 2)
- 64. Proposal: ‘The Future’ Assumption(s): the people ‘want’ personalized healthcare, and that the Government accepts a fiduciary interest in data National Generational Medical Record Data Set (of all deceased NZers digital medical records) Separate, governed, centralized, consented (the dead have special social identity) Why separate? Not a volatile dataset (not being modified), needs central governance (curation, standardization), current IT platform is disparate / siloed, removes potential for outside perturbations to IT infrastructure Question – what do people want?
- 65. Where to from here? • Governance: current laws? Access to posthumous medical data? Where is it kept? Are there legal barriers to a centralized repository? What about ethnic data? • Ethics: what should a robust consent framework look like? • Infrastructure: what IT platforms would support access to medical data acquisition and storage? What sort of security is required? • Health economics: what are the benefits of utilizing posthumous medical data? • Public consultation: anonymity vs personalized medicine?
- 66. Anonymity Privacy Exploitation Commercialization ‘Unknown’ specificity and utility of future personalized medicine (for self and descendants) Posthumous digital medical record governance / utility will need to be addressed Data Protection?
- 67. Thank you Dr Jesse Wall (University of Otago) Prof Jim Elliott (University of Sydney) Dr Allan Sylvester (VUW) Prof Steve Warburton (VUW) Dr Kathryn McAuley