The value of patient data
25 May 2016
We predict the connected health market will be worth almost US$61 billion globally by 2020, representing 33% average annual growth over this period. While this presents a huge opportunity to the sector, organisations have to give people sufficient confidence to share, and use, technology in an aspect of their life that is personal and sensitive.
Any concern from healthcare providers, patients and governments around data privacy could delay the growth of this market. This is particularly so in the UK, where we have already been restrained due to mistrust in health data security. So how can we get patients – and physicians – on board?
Patients can decide what their data is worth
Data sharing experts at Harvard say we can’t guarantee anonymity of data, especially genetic data. For example, it would appear to be in the common interest to share data about rare diseases, but patients need to consent that they are happy for data to be shared not just about themselves, but also about their future offspring.
Rather than focusing on perceived issues of data security, the way to gain patients’ trust is to weight the discussion towards the problems that digital can solve for the NHS – and, therefore, for them: The NHS Five Year Forward View is about designing new models for delivering care, mostly around integrating care across organisations. This is completely reliant on integrating care records which can be accessed by multidisciplinary teams – all of which will have huge benefits for patients.
The key to unlocking this lies in learning from the past. It used to be that individual organisations had their own strategies for reducing variability in patient outcomes and the quality of care people were getting. Now it is about whole regions – or ‘health economies’ – coming together to look at what they need to achieve for their population, and how to use digital to solve some of their problems and improve outcomes for patients.
Links in Liverpool
Liverpool Clinical Commissioning Group (CCG) is one such provider making the most of digital technologies. Its More Independent programme links apps with patients’ health records and clinical systems in a bid to get people better engaged with their own health.
This is a great initiative, but more needs to be done to get patients on board. While NHS England's Patient Online programme has enabled patients to access their full GP records, uptake has been slow. Many patients are still unaware of this usability, and GPs and patients remain concerned about data security.
Sharing of data will be key to embracing a fully digital health ecosystem. However a balance needs to be struck between data access, availability and integrity. Current technologies haven’t allowed us to strike this balance, however a new technological innovation known as Blockchain finally will.
Blockchain technology consists of ‘blocks’ of data in a digital ledger, the way this data is stored and processed makes it highly resistant to malicious tampering enabling for the first time, immutable record keeping and audit trails. Blockchain provides other benefits such as removal of intermediaries, automatic reconciliation and greater automation. This has the potential to provide the security and access management behind health records, as well as reducing fraud, error and the cost of paper intensive processes.
In terms of healthcare data, this means you could upload your medical history and ID records onto a blockchain and choose which healthcare providers can access it. This would allow you to choose and change providers without the wait to transfer and validate medical records and insurance paperwork, or allow hospitals to create a tailored patient journey for you based on your conditions and booked appointments. The Blockchain can act as an immutable log that records an unchangeable history of who has accessed and edited your information. This enables greater transparency and oversight of your data and creates the trust environment for data sharing. Blockchain will help accelerate a move to a more patient centric health model. Estonia is already using Blockchains to secure electronic health records, and it is probable that other countries could leapfrog the UK when it comes to the take up of this technology, as they don’t have the barrier of fragmented infrastructure that we have to overcome.
In fact, some clinical trials are already being managed using a blockchain, such as the Computerised Life Events Assessment Record project (CLEAR), led by Professor Antonia Bifulco, which is developing an interactive online method for measuring stress based on life changes, events and ongoing difficulties.
This exciting technology is proving a major disruptor across many industries. Although healthcare is a new player, it has the potential to give patients a sense of security around the safety of their data.
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