This is a big leap on from my founding story blog – it’s mostly to start to discuss the results of our last year’s research, an Innovate UK grant fund we won for patient-centred self-managed care – and just some of the initial thinking about how to translate patient-centred thinking into digital reality.
Part 1 – the NHS view
A patient’s lifetime of care is fragmented across multiple disjointed channels: the public sector (GP, NHS Trusts, Social Care and funded care providers), private health care, employee supported care, possibly some apps and maybe some personally funded care.
My Care Pathway is not being enabled and I am digitally unempowered in my own care.
There is no patient/client-centred manageable view of my history of care designed specifically so I, as the patient/client is empowered in my own care management through the collated guidance of clinicians I have engaged with (managed self-care – a subject for a later blog).
What is the NHS’s patient-centred care process?
This has been a matter of much debate for over a decade. But progress and coherency is starting to emerge. In the NHS they talk about patient-centred care planning, implementing personalised commissioning and ultimately personal health budgets (the only point solution evidence of this so far, despite 12 year old recommendations, is if you are subject to a Section 117) with the aim of supporting patient choice. At the delivery sharp end, progress has reached the point that managed self-support is a goal and collaborative care is an objective – the NHS states this means a single patient-responsible person is needed, yet the family GP disappeared years ago and there is little sign of this patient-centred collaborative manager being put in place who can co-ordinate with me of MY lifetime care journey. The system is just too burdened. The BMJ states patient-centricity means clinicians should “provide care which does things ‘with’ people rather than ‘to’ or ‘for’ them.”
Another word percolates all aspects of patient-centricity conversations and guidance – personalisation, which is itself often linked to ideas of coordinated and integrated health and social care support. As the King’s Fund highlighted in their seminal paper on patient-centred cost-effective care; patients want greater continuity of care and they want greater empowerment in their care programmes and to do this they need more personalised education and support. But in the absence of the family GP that knows you and your family inside out, and looking at a system that increasingly advocates greater numbers of independent service providers to step in and support patients – how do we achieve a personalised, patient-centric, collaborative health care process?
Current Digital Systems
The NHS clinical record is focussed on aiding clinicians to understand clinical care given by the public sector services only, unless a private supplier has been granted access as part of a managed care contract, even then there are many restrictions on access and updates – as an example I recently went for a diabetic eye test, the letters all implied organised by the NHS, but when I turned up, it was I who had to inform them that a few weeks before I had scratched my lens and had some eye drop treatment (I could not remember what). When I suggested they look at my notes, it turned out they did not have them, apparently that service setup had decided they were not necessary for access by what it seems was a private sector contractor – this was not the view of the person testing my eyes nor myself. Turns out that the data was not in my NHS accessible app either, no idea why not, time delay? NHS Trust and GP not linked up ? who knows. The point is – seeking to integrate this patient/client data as a back end service is a very costly exercise in delayed capability from a digital systems integration (before value delivery) perspective.
There will always be another care provider that needs to integrate into a monolithic back end before I get effective service for My Care Pathway
The second point is, this NHS record system model excludes any care information about care provided from the private sector, employers (who are being increasingly motivated to engage in this process), charities, or even many aspects of social care where frontline delivery happens through a multiplicity of public/private care providers. It’s a veritable vacuum of information that the patient is required to fill in during consultations (assuming they realise it’s relevant and can remember the details during the care consultation). The horror stories we have heard in our research of patients/clients with LTC (Long Term Care) needs and/or co-morbidities that span these siloed services, the boxes of paperwork they collate in the vain hope their next care provider will review them, don’t bear exposure. Clinicians at the delivery front line experience these issues every day and do their best to work around them, fully aware of potential risks, which perhaps they then have to mitigate through additional tests, certainly by further time-consuming patient interrogation. The point is, the digital support services are definitely not patient/client centred – nor are they effective or efficient. Additionally, as the BMA has repeatedly highlighted since 2011 and before,NHS clinical records are written mostly to be used by clinicians to share information with clinicians, they are not written for patient consumption. Of course patient/clients have a right of access, but that should be mediated by a clinician that can ensure they add clarity, not create concern. This is partially why it’s been such a long time between concept of an NHS app and the limited reality we see today.
So there are 2 core issues:
- Where and how the patient/client data is orchestrated to meet their life long care needs
- The nature of the care information that is shared with a patient, which should be constructed for their utility as well as a clinicians
The second point will be covered by a blog on managed self-care, the need for it and how to digitally facilitate its manifestation within current care processes.
Where and How Patient/Client Data is Orchestrated
The NIHR Children and Young People MedTech Co-operative, as an example, discusses the “Transition” of children from CYP to adult care services, they even offer another description for it, ‘cross cutting’. The fact these words exist to describe the technical process surely highlights that the current system translates organisational configuration into digital system design, completely missing the point that digital systems do not have to, nor indeed should, follow the structural model of a huge organisation like the NHS with its localised care provisioning model.
We would argue that if we are patient/client-centred in the digital support architecture then no significant digital system transition (cross cutting) need occur even if there is organisational management/structural change, such as a new care provider. Digitally – it’s a transfer of information “access” from one clinical org to another, facilitated by a change in access rights, one which the patient/client should or can be directly integrated to ease the informational flow – because when patient/client-centred, that’s how it would work!
This is not some radical rethink of the NHS’s plans to federate their systems of systems (even if, like myself, you have deep concerns about the integration costs this mapping of digital integration to organisational configuration will drive), instead it’s about looking at the balanced trust relationship between patient/client and clinician (or carer) at the point of engagement and seeking to both
- Empower the patient to participate in their care pathway, matched to their lifetime of care needs from ANY service supplier
- Simplify clinician access to a rich, complete and detailed history of the consultations a patient/client has experienced and how they can be built on
This latter point can be complemented by appropriate access to NHS clinical records (if available), which provides previous clinician-centred detail around that patient’s public-sector support (drug use, treatment received, outcomes monitored etc). This is a new type of record, constructed as care pathways are planned and personalised during care delivery, because if care is not the personalisation of a general treatment plan or care pathway to a specific patient/client’s needs, what is it? We think of this as a patient logbook.
Do we consider the patient’s lifetime care patient-centrically?
In over a year of engagement and research with clinicians, counsellors and service providers, I have not met a single one that is not so centred around their patients’ needs that you would not call them patient-centric in the care they provide. Yet when we look at the processes patients are put through to receive treatment, are the digital processes equally patient/client-centred? Patient/client onboarding to a service generally starts with many questions about their condition and their history of care, and then a requirement to visit a clinician’s safe and confidential space for treatment. While the detailed questioning is arguably historically understandable in the private sector, this is sadly true even inside the NHS, because GP records are sparse on treatment detail, even if a diligent NHS Trust ensures the sharing of notes (too many EHR systems have been in development for 3, 5 and even 7 years in some cases). If a patient moves between Trusts there is a lack of data record interoperability (happy to discuss how the NHS data model is not interoperable – its hopefully integratable, very different things, that should end up with a useable interoperable user experience but has pushed complexity into integration where it generally gets mired as its away from the front line service need, but this is a topic for another blog sometime), often requiring time costly exercises in engagement between organisations to share information. This leads to significant risks of inappropriate care, or as a minimum, inefficiencies for the critical and limited front line clinical staff time. One child psychiatrist in the NHS described the problem as the hari-kiri moment for their patients, who he has seen lug literal boxes of printed records around with them as they transition across the care network, most of which they described as repetitive content, potentially covering the same old retraumatizing ground. This, despite trauma-informed care, which if you think about it is the clinicians way of working around a poor record sharing system. But trauma-informed care, as just one example, has become a process-driven ‘needs must’ exercise – yes, it will always be needed – but it should not be needed at initiation of care if the trauma has been described to a clinician before. Patient centricity should recognise that we can digitally empower patients to “own” their care pathway, and through that, the clinicians engagement with that part of their care pathway can be readily shared and made more efficient.
Now consider the shift to ICS’s for procuring and managing services. There are two critical changes ICS’s are tasked with ushering in, the first is to integrate social care – for which mental health treatment follow-on support is often a long tail co-morbid need, the second is to embrace more private sector and charitable organisation engagement and service delivery. Combined this will lead to an increasing need for a patient treatment history that spans private and public sector care. While the shift to EHRs (Electronic Health Records) may accelerate GP “clinicial” record sharing, the detailed history of a patient’s treatment is lost in a quagmire of service provider interventions. Add in a plethora of digital apps which these individual service providers introduce, and the patient’s actual experience goes down, not up, as digital is used to engage in so many different ways
I, as a patient, do not want another app for each of my morbidities. I want one system that multiple service providers can collaborate around, safely and confidently to meet my care needs
Flipping the Treatment Room Concept for Digital
The post-lockdown shift to acceptance of online treatment as a viable and effective means of hybrid (online with face to face) delivery and support, gives us a chance to rethink the entire treatment delivery process over a patient’s lifetime. Patient’s must like something about it, as the NHS reported a 51% reduction in cancelled appointments and a 26.7% reduction in Did Not Attends for online appointments versus face-to-face. In the USA reports show a consistent 38x increase in telehealth post lockdown when compared to pre-lockdown, our own estimates are that the UK has grown 30x – it is also worth noting that the NHS has now mandated 25% of consultations shall be online or remote. However, there are concerns about the digital divide for mental health patients, which means conscientious service providers must be very careful to continue to supply face-to-face services in a hybrid support plan and not just cherry pick the easy cost-reduced digital methods of online delivery.
Let’s start with the idea of going to the clinician’s room for treatment. Why do we do that? Because it’s a safe space, quiet, confidential, not overlooked, probably sound proofed. But we can create that same assurance level online (with some challenges and changes of processes) – except clinicians don’t know how to ensure the digital space itself is safe – they are not digital people – and video conferencing tools were not designed for the patient-alliance building needs so central to effective treatment outcomes, nor do they reflect the care pathway planning mechanism nor personalisation capacity needed. Something dedicated to purpose is needed, something that empowers non-digital clinicians and counsellors to bring their expertise into a patient-personalizable managed space. Something more akin to a highly confidential learning management system where service providers can build treatment pathways, and where clinicians and counsellors can personalise the content to their patient/client needs.
We call this concept a Patient’s Virtual Treatment Room (PVTR).
If we look at the digital platform more as a process enabler, patient-centrically, then who should the treatment room effectively belong to? We say to the patient! All the shared notes, messages, discussion areas, whiteboard scribbles, homework results and progress questionnaires, sustained in a time sequence. This detailed treatment history is something of huge value to patients – why do we think it’s value is only in the moment? Why can’t I as a patient keep a record of it, browse it in the future when I get a PTSD recurrence and need reminders of my coping strategy? Or how to think my way out of a depressive dip or anxiety downwards spiral? After all – that content was personalised to me in treatment – surely I can take it away with me? If we go back to the retraumatization problem, why can’t the trauma review be done once, recorded in my Patient’s Virtual Treatment Room (PVTR), and made accessible to future care providers by me – without me having to revisit that trauma? Just a few examples of how a patient-centred managed self-care platform can augment existing treatment processes and address lifetime care, especially for comorbid or long term morbidity issues.
When digital becomes, or augments, the treatment process, with a clinician in the loop, we have a new opportunity to empower patients and through this realise a patient-centric digital future that ensures treatment sustains for self-support and through this makes the process of patient care more cost effective. One day we will be able to show how such a system reduces demand as patients become more empowered in their own care – and if there is one thing the NHS needs, it’s a reduction in the growth rate of demand.
This is Safe Space One’s core mission.