DATA IN CARE

As the UK emerges from COVID-19 restrictions, some of the old debates are beginning to reassert themselves, and now the minds of politicians and the public are returning to long-term public health issues. In June, the publication of a draft strategy paper from NHSX and the Department of Health and Social Care (DHSC) was scarcely noticed by many. The paper threw into sharp relief the debate about where patient privacy should end, and where joining up NHS data across the NHS estate and beyond can be expected to drive better outcomes for patients and clinicians alike.

There will surely be many across the private and public sectors in healthcare and technology who will feel the publication of Data Saves Lives: Reshaping Health and Social Care with Data marks a significant and welcome step. Harnessing the relatively untapped potential of joined-up patient data use brings closer the prospect of delivering significant health, social care, and services improvement across the NHS and elsewhere in the wider health system. The national public health emergency caused by COVID-19 has highlighted how effective data analytics can simultaneously save lives while driving efficiencies – both of significant value to the NHS. This has played a huge role in tracking the virus and infection hotspots, prioritising the distribution of critical resources, mapping regions and groups for mass vaccination and, most importantly, in the case of this latest initiative, accelerating the ease of access and sharing of patient care records.

It is therefore encouraging to see the importance that DHSC and NHSX is attaching to placing the patient at the centre of the care pathway. People should be closer to their own data, which will enable healthcare professionals to review the entire clinical journey from GP surgery through to patient aftercare, and ultimately improve outcomes.

This concept is something the private sector is rapidly innovating. We therefore feel well placed to provide our perspective and to assess this initiative through the lens of both a primary care clinician and a thought leader in the private, digital health space. We seek to strike a balance between someone embedded within the NHS, and an innovator outside it.

The crucial point, from a patient perspective, is about building a system that can maintain trust, confidentiality, and transparency. It is also about building and maintaining the highest standards in data processing, which will be critical to building trust amongst patients, clinicians, and wider organisations.

The rapid rise of data use over the last ten years, and digitalisation of many aspects of our lives, has led, somewhat understandably, to concerns about the scope for data leaks, and the fear of inappropriate use being made of individuals’ data. To this end, developing and enabling a transparent health data system that allows users to see how and when their data is being used, is to be warmly welcomed.

Another question that needs resolving is how we come to a shared understanding of what ‘data’ mean to those using the system, ie the patient, and the care giver. Given the complex nature of health data, data privacy, data handling, and legalities surrounding data, if patients are going to ‘buy-in’ to the concept, they need to be persuaded of its value and indispensability for their own wellbeing. The Wellcome Trust’s Understanding Patient Data, a health data initiative working in partnership with the NHS, which seeks to bring transparency, accountability, and, crucially, understanding, will be an important tool in delivering this. However, further initiatives will be needed to bring all stakeholders onboard, such as clinicians and healthcare managers. Patients will increasingly engage with their data in the future. This is inevitable. But if participants, such as those clinical and care staff delivering healthcare, are not well positioned clearly or openly to explain or discuss this with their patients, then full acceptance cannot be guaranteed.

From a technical perspective, personal data stores, in whatever form they take, will only work if all the moving parts of the system are speaking the same health language and information can be contextualised by the person receiving or reviewing the information. The mass consolidation of data, and the joining up of all the constituent parts will require a unified governing framework and terminology system. Universally accepted clinical vocabulary systems, digital platforms and frameworks, such as SNOMED CT, will of course help ensure there is ubiquitous language across all systems. But we would suggest more still needs to be done.

Access to relevant patient data is hardly a new or groundbreaking concept. However, as witnessed acutely during the pandemic, access to substantially enhanced data sets and the ability to review such information in innovative and more efficient ways, can help clinicians, researchers, and healthcare managers make transformative differences to patient and public health outcomes.

However, such innovative analytics will only be as good as the data being supplied. Transposing raw data, some high quality, some low quality, which will come from various sources including digital platforms and apps, will need extensive health analytics capabilities. And as patients are increasingly likely to add their own data to the system, it is imperative that proper governance and validation frameworks are put in place to best inform the decision-making process, and provide clarity and reassurance both to patients and clinicians.

We may see this when linking digital and remote assessment tech with real-time patient data collection, such as through home monitoring systems, which really could revolutionise care delivery to the most vulnerable patients in society. However, this will need to be supported by innovative analytics and thoughtful consideration of how and when this information flows back to healthcare workers. There would obviously be little value in having a set of data delivered that had not been through a considered process of analysis to ensure that information was being used effectively. Indeed, it would be possible to imagine poor outcomes being the result of a failure to achieve this.

Shared care records, i.e., the various constituent parts of the health and care system seamlessly sharing information about patients, has the potential dramatically to reduce errors being made from a clinician’s perspective. However, patients will in due course be likely to expect all parts of their health and care experience to be included in this process, both within the NHS as well as any private or thirdparty healthcare companies and providers. They will want all of their health data to sit within their central shared care record, and so naturally this needs to be underpinned by clear and well understood structures about how this data is used, in order to maintain transparency, honesty, and trust with our patients.

There will also be inevitable questions about what constitutes appropriate stewardship and curation of shared care records. And there will also be challenges. For example, how can this all be done coherently and effectively in the context of a shared record that intersects with different parts of the health system, some of which speak different ‘health’ languages? Who will be responsible and accountable for the overall curation of these records? Who will ensure critical information is kept up to date and made consistent with information previously data inputted? We would hope that, as a part of the consultative process on initiatives like Understanding Patient Data, the mobilisation and inputs of private and third sector groups are brought in to play in order to provide complete and compelling answers to these questions and create the best possible, and most sustainable, solutions and systems for the future.

We don’t believe this needs to be limited to public sector healthcare leaders. Where there is a legitimate reason, underpinned by the right consents, confidentiality, and governance systems and processes, organisations providing care beyond the NHS, but still critically important parts of the UK healthcare ecosystem, should have access to shared cared records. This is necessary to ensure clinical and social care continuity, especially as the delivery of services via digital platforms and operators continue to increase. In the event of a further lockdown or emergence of a new COVID-19 variant, this will be vital.

A good example would be patients attending private hospitals, referred to by their private health insurer but via an NHS GP, for surgical procedures. Of course, they, and their physician, would benefit medically from shared access to this information. As per the draft guidance, “where access to data is granted, having met these high thresholds, it must always have the explicit aim to improve the health and care of our citizens, or to support the improvements to the broader system.”

The plans included in this draft strategy are bold, ambitious, and necessary. But questions do arise. Are they achievable in the timeframes stated? How will the big propriety systems that are already contracted and providing services throughout the NHS come onboard? How will public and private sector organisations work together, without ever compromising or impairing the objective of improving patient outcomes?

The commitment to help innovators and health technology providers to work with health and care organisations is very much to be welcomed. Building the right architectures and standards to allow third parties readily to innovate and share those learning with the NHS, and supporting this with a clearer pathway to achieving effective whole-of-market strategies, is exactly what the proverbial doctor ordered.

We all want to achieve brilliant outcomes for patients and their care. Patients deserve no less. But those outcomes must be the right ones, as well as achievable and sustainable ones. As always, the devil is in the detail. So, we await with eager anticipation the next iteration of NHSX’s proposals.