Blockchain for shared records in healthcare, research and publishing
A blockchain is a ledger of transactions held on many devices with no central authority. By 2019 it was being tried or proposed in healthcare, research and scientific publishing and was proving hard to put into practice, and for a writing team it could hold the shared draft with a time-stamped record of each contribution. The review tools a team uses now are in collaboration and shared-document tools, and the legal protection of participants' data in data protection in clinical research.
Know what a blockchain is
The account of the technology and of the projects comes from a December 2019 article in EMWA's journal by a medical consultant and the chief executive of a company bringing blockchain to health research, whose declared interests are extensive: the consultant was a review editor for a blockchain journal section and had received consulting fees from Novartis, and the chief executive's company appears among the projects the article lists, while he held unpaid roles in several of the journals, standards groups and societies it lists. The project lists are therefore an account from inside the field rather than a survey of it. The December 2019 issue of EMWA's journal (volume 28, number 4) was admitted from an existing Markdown conversion without content repair, and its known conversion limitations are broken ligatures, mangled multi-column tables, interleaved page headers and footers, and figure text represented as marked text.
Clinical, research and publishing data are transmitted and stored on cloud-based networks, and such systems often lack comprehensiveness, accessibility, interoperability, confidentiality, accountability and flexibility, which can delay treatment, slow research and make the work generally inefficient. Data held online by companies that guarantee their security, such as banks, are never definitively safe from hackers, however well protected, mainly because they sit in one central place, which makes them easier to steal. A blockchain records information in blocks onto many devices, forming a chain, all at once over the internet, and the information is not limited to one kind: it can be money, data, music or agreements between individuals. The Bitcoin blockchain, developed in 2009 by the anonymous individual or group known as Satoshi Nakamoto as a peer-to-peer electronic cash system, built on earlier work by Stuart Haber and Scott Stornetta. Unlike a cloud-based system, a blockchain is a decentralised, distributed ledger of digital transactions with no central point, which makes it harder to break into a single device and steal information, and data managed that way are open, permanent, verified and shared without a central authority. It is not a new stand-alone system but a layer of trust between the data and its users, able to integrate with other emerging technologies.
Know where it was being tried
For healthcare supply chains, the value of a blockchain is that it creates records of transactions that cannot be altered. Information about a drug shipment from factory to patient — temperature, price, to whom it was dispensed — could be held in a blockchain to improve safety, by documenting each step of the drug development process more transparently, and to minimise fraud; in research, laboratory notebooks and records could be managed more easily and transparently, and publishing processes optimised. By 2019 Estonia had secured every citizen's health record with the technology, giving citizens control over their own records; blockchain could also support initiatives such as the UK's National Institute for Health and Care Excellence and the National Health Service's digital frameworks for evaluation, both of which require a great deal of record keeping and data exchange; and the other uses proposed included pharmaceutical supply chains, medical device cybersecurity, organ tracking in transplantation, medical claims and billing, tracking data from health wearables, and public health data security.
Communication is paramount for scientific research, which depends on exchanging ideas, hypotheses, data, results and eventually publications across media, geographies, universities and companies, and which relies on researchers to report their failures as well as their successes, which rarely happens. The journals and organisations the article selects as paving the way in scientific publishing are Ledger, the first journal focused exclusively on blockchain and the first to apply the technology to the publishing process; Blockchain in Healthcare Today, the first focused on health applications, including the research underlying the evidence base of medicine, whose publisher also issued a conference's content as a podcast issue; the Journal of the British Blockchain Association, the first aligned with a professional society; Frontiers in Blockchain, the first title a legacy scientific publisher devoted to the subject, with a section on blockchain for science; and Digital Science, which with its publishing associate and several universities and publishers was applying the technology to publishing.
Professional societies and non-profits were the second route, valued for neutral standards, long-term vision and commitment, and their ability to broker collaboration. The Healthcare Information and Management Systems Society's blockchain task force had grown from one panel in 2018 to a full-day pre-conference symposium in 2019, and the society had co-published a textbook on blockchain in healthcare with chapters on research applications; the Institute of Electrical and Electronics Engineers had held two conferences on blockchain for clinical trials in 2018 and was developing standards for trials alongside supply chain standards, and its standards arm had launched a two-year open effort on a framework for distributed ledger technology in healthcare and the life and social sciences, with a research subcommittee; and a trade association under the same institute's umbrella focused partly on health research.
Many biotechnology and pharmaceutical companies were exploring it too, mostly behind closed doors. Ten of the largest public companies in the world were exploring blockchain, and Deloitte surveys had estimated that nearly 35% of life science companies planned to deploy it in 2017 and that 17% of respondents already used it. The industry projects the article selects are Wolfram Alpha, a top name in research statistics, exploring a framework usable across scientific research; Science Distributed, a small firm designing network-level blockchain solutions for health research; Novartis, one of many large pharmaceutical companies exploring uses of the technology; Chronicled, Inc. and the MediLedger Project, a supply-chain consortium of several pharmaceutical giants; and the Innovative Medicines Initiative — the public–private partnership between the EU and the European pharmaceutical industry association — which had earmarked up to €18 million for a blockchain-enabled healthcare programme expected to last three years.
Know why it proved hard to implement
As with many new technologies in healthcare and research, blockchain had been enthusiastically promoted and had proved difficult to realise. Evidence-based practice, patient safety and legal compliance regulations do not encourage accelerated innovation; digitally signing a secure, permanent record consumes a great deal of energy; data on public chains are not private, so patient data are at theoretical risk, though cloud-based storage carries the same risks to a greater extent; and data stored on a blockchain cannot be deleted, which could conflict with the EU General Data Protection Regulation, under which patients must be able to opt out of the storage and use of their data in some circumstances. In many cases, though, only an encrypted hash linked to the personal data is stored on the chain rather than the data themselves, which mitigates that concern. Last, companies, research groups and publishers are competitive rather than collaborative, which slows the adoption of new technologies such as blockchain.
Know what it could change for a writer
Medical writers often liaise with statisticians, key opinion leaders, healthcare providers and scientists, gather their feedback and merge it into one cohesive draft. On a blockchain, every stakeholder could have permissioned access to the data, drafts and publications in real time, with each contribution time-stamped and a shared ledger of changes visible to all parties. The systems used to develop publications can also differ widely between clients, so maintaining an archive of each publication's records can become a large task in its own right, which standardised blockchain-based systems across healthcare, research and publishing, the industries where writers are typically employed, could address if those industries started to use them. Applications are more likely to improve existing workflows, rather than producing something unused or forcing uncomfortable change, if writers are engaged early in their discovery, design and testing, and it falls to writers, as to every stakeholder, to stay willing to implement new ideas.