My accident, which has forced me to rest, has also given me time to reflect and think. I now realise that we are potentially at a crossroads that could allow us to reconfigure healthcare. The reasons for doing this are obvious. The current antiquated Victorian model of healthcare, which is fixed in time (synchronous) and place (geography), is too inflexible; in particular for the emerging era of preventive medicine. The NHS is simply not ready nor configured for the efficient implementation of preventive medicine and for aiding people to self-manage their own chronic diseases.
We clearly can’t get rid of hospitals and their associated infrastructure, which are needed for managing acute problems, for example, trauma and surgery. However, can we reconfigure the healthcare system to free up resources so that hospitals can do what they do best, i.e. treat acute medical problems? And can we shift the management of chronic problems out of institutions such as hospitals and break the fixed-time/place constraints for managing these conditions?
In reality, this is already happening, albeit poorly planned, with the rapid adoption of telemedicine during COVID-19 pandemic. Many of my colleagues, probably the majority, think telemedicine is a temporary solution and are keen to get back to the pre-COVID-19 way of practising medicine. This is where I differ from them; I don’t want to go back to the same-old. The same-old is not very satisfying for HCPs and patients alike. In reality, the Victorian model of healthcare defines patients as passive recipients of healthcare and creates physical and psychological barriers to the delivery of healthcare. By having the HCP in control of the consultation disempowers patients. The current system disenfranchises patients, i.e. they have very little control over how they interact with the NHS; it is our way or no way at all. Simply, navigating the NHS is a daunting task. In reality, NHS is a quagmire; a hotchpotch of local services that differ from region to region in their delivery, access and quality.
When I was discharged from hospital with a TTO (to-take-out) prescription and other supplies, such as wound dressings etc., that would only last two weeks and a referral to the local community rehabilitation team, I was told that my discharge letter to the GP and referral letter will be sent out the same day. I was instructed that I would have to make an appointment with my GP for suture removal and to get a repeat prescription in two weeks time. When I tried to contact my GP I was directed to an NHS online portal to make the appointment. The online questionnaire took about 25 minutes to complete and when I got to the end it told me that it could not make me an E-appointment, or a physical appointment, because my problem was urgent, when in fact it clearly was not urgent. The NHS portal then instructed me to phone my GP practice urgently. Fortunately, the NHS online portal gave me a specific telephone number to call my GP practice. When I dialled this number it was answered promptly, but the receptionist was unable to make my appointments for the suture removal nor the repeat prescription until I had spoken to a GP. The receptionist then scheduled an urgent telephone consultation for me to talk to a GP that afternoon.
A very kind GP phoned me that afternoon but clearly had a blank screen in front of them. My discharge summary had not reached them yet and all the information I had entered on the NHS portal that morning about my accident, my management and my medications had not been transferred to the GP’s record. I then spent the next 15 minutes going through my recent history and management and giving her a list of all the medications I had been discharged on before she could offer me an appointment to have my sutures removed. I was then told that I had to repeat this process about 48 hours before my repeat prescription was due so that repeat-prescription could be processed in time for me to collect my medications. I am anticipating going through a similar process to one above for next week’s consultation; let’s hope I will be pleasantly surprised.
When you analyse my touchpoints with the NHS above you realise how much duplication of tasks and data entry are occurring with each episode. If you multiply this up across the UK you soon realise how inefficient the NHS is when it comes to data capture and data repurposing and time wasted recapturing data. Surely there is a simple IT solution to this problem?
My worry is what happens to people who are not digitally aware and who do not have home access to the NHS E-portal? Can they bypass this NHS digital stonewall? This is why we need the government to pass legislation making internet access a utility and mandatory for all citizens and that local authorities have to put in place programmes to teach the digital illiterate how to use these resources or provide them with the necessary help to do so. If Finland can do this so can the UK.
As I had not heard from the community rehabilitation team by Thursday (6 days post-discharge) I called the number that I had been given on the copy of the referral letter I was given when I was discharged from King’s College Hospital. When I got through to the rehab team they had no record of my referral. Interestingly, they were able to locate my electronic record, but I was then told that I was speaking to the wrong community rehabilitation team. They then provided me with a new contact number and this time I got through to the right service, only to find out that the waiting list for home rehabilitation was 10–12 weeks. I subsequently told them as I had achieved all the objectives set for me on the referral letter and was it necessary to see them at all? As I was speaking to an administrator she wasn’t prepared to take me off the waiting list. At least the latter prompted a call from an occupational therapist the next day. I told the occupational therapist that since discharge I had become fully independent and was now walking at least 1km per day without support. I made her aware that I was also doing a daily upper body and lower body work-outs and was seen improvements on a daily basis. She agreed that I didn’t need to see the rehab team and has now officially cancelled my referral; I am off the waiting list. Despite this, I think I still need some advice about the intensity of my rehab programme, whether or not I am focusing on the right muscles and whether or not I need passive stretching and massage.
As you can see I have taken my rehabilitation into my own hands with the help of my anatomical knowledge, Google and some basic home gym equipment I purchased from Amazon; you can call this self-management or DIY rehab. This is an example of a patient, me, being proactive; why can’t this type of behaviour be extended into other areas of healthcare? I would have loved to have been directed to an NHS website to have guided me through this process or even better an intelligent NHS application that collected data and adapted my rehab programme to my needs. The data collected via the self-management rehab app could then be repurposed for learning, research and included in my personalised electronic health record. Am I asking too much?
The greatest untapped resource in preventive medicine and in the management of chronic diseases, such as multiple sclerosis, are us the patients. How do we grab this moment of opportunity in time to empower and equip patients with the skills and resources to revolutionise their own healthcare?
The NHS is a behemoth and one of the largest employers in the world, which makes it very difficult to change. I like to think of the NHS as a healthcare platform. The hardware is its real estate (hospitals, clinics, etc.) and its operating system are its staff and myriad of contractors who support the NHS. At the moment the NHS is a distributed network of hardware that are poorly connected to each other in terms of data sharing and sharing best practice. Just as computing technology has moved away from using standalone software to cloud-based software with data storage and analysis in the cloud I think we can do the same with the NHS. So if one NHS Trust or a GP practice develops a self-management service to manage as an example neurogenic bladder it should be cloud-based, use a standard data collection protocol and standard APIs (automated programming interface) that will allow another service to use it as well and plug it into their own system.
So what happens if three or four competing apps for the self-management of bladder dysfunction emerge? You could let them compete against each other in an NHS app store and over time the one that is rated highest with the most users will become de facto the best. The competition will encourage innovation and will hopefully drive improvement in the applications on offer. Using the cloud and standardise protocols will rapidly scale self-management protocols and drive innovation in the NHS.
What about diagnostic apps? These already exist and can be improved on. What happens if a diagnostic application requires a neurological assessment, neuroimaging or other diagnostic tests? This is when tech meets traditional medicine and the application makes an appointment to see the neurologist linked to that specific part of the pathway. The neurologist won’t be seeing this person blind. The application will have collected data in a systematic way that will be available for the neurologist to review and to add to, i.e. to enrich the data. I also see a future when these self-management and diagnostic apps having embedded assessment tools and outcome measures, which will enrich the data.
Some people will criticise this future view of healthcare as being dystopian. I should remind you that this is already happening in real life. What is important is that pwMS, HCPs and other stakeholders are involved with the design testing and refinement of the apps and that a robust ethical framework is put in place to safeguard patients. In addition, NHS digital will need well-run teaching courses in parallel to upskill patients, their carers and families on how to navigate and use this system.
If you think more broadly you realise that the human touchpoints in a digitalised healthcare system don’t necessarily have to be geographically constrained and therein lies the power of a distributed network; it taps into the whole country and that will allow economies of scale to develop. For example, a well-run and resourced self-management application for chemotherapy-induced nausea and vomiting could manage tens of thousands of patients and do it extraordinarily well rather than having thousands of duplicate services across the country who don’t do it very well. I use chemotherapy-induced nausea and vomiting as an example because a close friend of ours was suffering terribly after chemotherapy and only found relief months into her treatment when she was referred to a palliative care team with the know-how. Why didn’t her oncology team get it right the first time? What mechanism is there for the palliative care team to feedback to the oncology team what that found effective? I suspect there won’t be a feedback look because our friend has been discharged from oncology for palliative care.
The big data a system such as this will generate will allow artificial intelligence to learn and tweak the application(s) and the system will be able to improve itself. A question the NHS will need to ask itself is whether or not it is prepared to give digital power to the people and let them control and own their own data and management? The NHS can always ask permission to use patient-level data for improving the system, doing research and for providing standardised, state-of-the-art care, that in time will be truly personalised. I suspect only a tiny minority of people won’t consent to the repurposing of their data for the common good.
The NHS role should not be to try and control this digital revolution but encourage their million pulse employees to be creative. NHS Digital would obviously need to create the backbone, i.e. the data sharing standards, ethical approvals, define the APIs, create a funding stream and create and support a high-level developers platform that is easy to use. The latter will make sure the apps all speak a common language and will integrate their data into NHS electronic health records. The NHS will also be required to run an App store with reviews and have a clear tiered system for apps; (1) app currently in-development, (2) developed, but being clinically validated and (3) validated and available for general NHS use.
At the moment the NHS app library is simply a list of third-party apps that have been vetted by the NHS. Apps in this library are stand-alone apps that don’t integrate into a common electronic health record the way I would want and expect them to.
If done well the NHS app store could change healthcare for both the NHS and other healthcare systems too. The NHS would revolutionise healthcare and possibly make a little money on the side, by licensing the apps to other countries, healthcare systems and private users.
What do you think?
Originally published at https://multiple-sclerosis-research.org on November 28, 2020.