The move to a paperless system to improve health and social care is an ambition central to many governments around the world. (ISC)² recently held a roundtable event in London, United Kingdom (UK) inviting several people who work within the sector and the country’s National Public Health Service (NHS) to explore a range of current issues, including the reasons why patients were showing a reluctance to trust efforts to protect their personal data.
The aim was to bring together perspectives from many areas of the healthcare industry and give them the opportunity to talk freely and anonymously about the opportunities and barriers they are facing as the sector undergoes digital transformation.
We are now pleased to publish a white paper detailing the main insights here, and share this assessment from one (ISC)² member who works for the NHS.
Derrick Bates, CISSP, Information & Cyber Security Officer for the North Cumbria University Hospitals NHS Trust discusses the issues and what is required to overcome them.
The conversation that the white paper has outlined highlights some of the major issues that are at the core of the difficulties faced by the NHS in 2017, beyond the issue of funding that often dominates the conversation.
The definition of a patient record for example is still something that needs to be ironed out. At this stage in the sector, it is difficult to define something which is amorphous at best, and does not
actually exist as a single entity in any meaningful form. It has more definitions than the Oxford English Dictionary. Ideally it would be useful to have a single record of all the healthcare and social care a patient has ever had or required across the time from minus 9 months to end-of-life. Is this achievable? Yes, but it would take vision, money and around 20 to 30 years at the current pace that the sector operates in.
As a consultant I used to use the following metaphor to describe such a system: Imagine you are holding a large beach ball that is constructed from hexagonal panels, some of which are transparent so you can look inside the ball. Inside is a tiny patient. If you look in one window you see the patient in a particular way. Another window still shows you the patient but in a different aspect. Another is different yet again. But, there is only one ball, one data file, one patient, many, many uses and views.
You can control what is seen and who can see it. This is where we should be heading. It appears that this sentiment is also felt by the people who engaged in the conversation which led to the white paper – so it’s arguably widely felt in the healthcare sector.
In the case of the emergence of personal wearable devices, it’s still something that so far remains in the hands of a select segment of the population. Only when it becomes wholly ubiquitous will we have a dataset of really meaningful worth.
With all the other issues facing healthcare they are at present a distraction. Good as a way forward, but there are more fundamental things to be done first, some of which were identified by the white paper. There is also what I call the ‘Public Sector Paradox’ – whereby patients and other users of Public Sector services expect that agencies will both share their data and keep it private. We talk about empowering patients in the control of their data. However, with the greatest of respect, there is not enough understanding around this and many simply can’t be bothered with it. It is seen as ‘our job’ in the sector until it goes wrong.
Finally, there is the issue of trust. The NHS is an organisation that is about us. It sees into our mind, body and soul, our brains, bones and blood, the very stuff which makes us. It is far more precious to patients than any other type of information. The NHS is also an organisation that has suffered and continues to suffer from a level of political interference not felt by any other organisation. Other sectors are regulated – as is the NHS – however other sectors are not regularly reshaped, pummelled, sliced up and changed nearly as much as the NHS.
The vast majority of people trust the NHS to make them better and think, quite rightly, that we have a world class healthcare service. Unfortunately the people do not trust politicians and by extension, the NHS initiatives dreamt up by politicians. The Gordian knot that is today’s NHS needs to be decoupled from direct political control and funded at the correct level for the service it is being asked to deliver.
Apart from the obvious matter of funding, in order to move forward with the aspirations identified by the participants of the discussion on which this white paper is based, there will be a need for visionary leadership, and a freedom to act. It will be interesting to assess how near or far we are to achieving this by the end of year.