What the f#%* is a PIFU?

Are you ready for the implementation of PIFUs? Will it solve the current NHS crisis? Will it sort out under-resourced MS services?

Are you ready for the implementation of patient-initiated follow-up (PIFU) appointments? 

Kate Bingham, the previous head of the UK Government's Vaccine Taskforce, mentioned on the Laura Kuensberg show, a BBC political chat show, two weeks ago that despite significant increases in spending on the NHS, productivity gains were too small. 

 

Over the last decade, the productivity gains have been at around 1% per annum. She urged NHS employees to think and work differently to improve productivity. I ask what NHS productivity gains look like, particularly what they look like for MS services. 

“The Office for National Statistics (ONS) calculates productivity as a ratio of inputs to outputs, defining outputs as a weighted average of 16 types of care activity, such as hospital cases, visits to doctors, and ambulance journeys. The weights reflect some view of the importance of each output. For example, the output index of the ONS weights an inpatient treatment 14 times as heavily as an outpatient treatment. The measurement takes no account, however, of the degree to which those events accomplish their purpose—healing. For example, it does not assess improvement in the mix of these so called outputs, such as when innovations in care allow patients to be treated successfully in outpatient settings rather than in the hospital. To its credit, the ONS notes carefully that “the output estimates do not capture quality change.”” (BMJ).

So for MS services, quality gains will be measured by more new appointments, fewer follow-up appointments, diagnoses with fewer investigtions, in particular MRI scans, and fewer unplanned hospital admissions. In short, productivity gains means doing more with less money spent per NHS encounter. This is called value. I note the metrics don’t include quality change, and therein lies the rub.

It is well-known and accepted by economists that healthcare inflation is always going to be higher than in the non-healthcare sectors. This is because the evolution of healthcare is dominated by innovation, and innovations, particularly healthcare innovation, tend to cost a lot. The savings to society from improved health and outcomes are not necessarily going to result in healthcare savings. A good example is healthcare costs that result in economic gains in other sectors because pwMS are kept well enough to continue working, supporting themselves and paying taxes. In contrast, a pwMS who is unable to work costs society money.  

This latter point may sound trivial, but it is tough to get a business case passed within the NHS unless it is cost-neutral or generates direct savings for the NHS within the current economic cycle, which according to most managers, is within the next 12 months. Another strategy is yes; we can pass this business case, i.e. start a new service, as long it is funded by your cost improvement programmes within your current service. When NHS staff are spread so thin, overworked and burnt out, writing and submitting a new business case is like the straw that finally breaks the camel’s back. 

Another factor dragging down healthcare productivity is the ageing UK population, with more age-related healthcare utilisation occurring. As we get better at treating MS, they are developing disabilities much later in life, and this in itself is having knock-on effects. I am seeing an increasing number of older patients with MS with whom I share care with the care-of-the-elderly (geriatrics) and palliative care teams. This is a relatively new phenomenon and a welcome one. 

From an MS perspective, direct healthcare spending is increasing due to the increasing costs of disease-modifying therapies. Once somebody with MS is started on a DMT, they tend to remain on treatment for decades. With the incidence of MS at epidemic proportions, the number of pwMS keeps rising. This is why there is a push for pwMS to be switched to lower-priced generics. Please note NHS England is only concerned about their budget and not whether their current expenditure is saving money for society in the future. Thankfully we have NICE to make some judgement call on this, but even NICE only uses direct healthcare savings, not indirect societal gains, in their cost-effectiveness models. Surely everyone should be happy with less disability, less expenditure on disability-related complications and keeping pwMS economically active. I view the treatment of MS as a preventive strategy, i.e. preventing future healthcare and societal costs by preventing disability. 

Despite this, we are expected to do more with less. One of the suggestions is to change how we work, and instead of having regular follow-up appointments, we allow PIFUs.  The NHS England and NHS Improvement paper on implementing phase 3 of the NHS response to the COVID-19 pandemic suggests using PIFU as part of the NHS COVID-19 recovery. PIFUs are one of the ways to help MS services recover. As a person with MS, are you prepared for only seeing your MS team when necessary?

I imagine three types of pwMS. Those who are well-educated, knowledgeable, and empowered to self-manage their MS would take full advantage of PIFUs, the kind of people who subscribe to MS-Selfie. Another group will be the less experienced, possibly slightly anxious pwMS, who will overuse the system and request to be seen more frequently than usual. I already look after many patients like this. Many of the frequent users' issues could potentially be dealt with asynchronously using email or an NHS-approved messaging service. This group also sadly includes those who are lonely and find their appointments with HCPs important socially. These patients like to use their interactions to chat with you and as an opportunity to ask questions. Sometimes these questions are unrelated to MS and could be related to their general health. Finally, the third group will be disenfranchised and not use the system appropriately. These people are high-risk already and often fail to attend scheduled follow-up appointments; the so-called DNAs (did not arrive). Please note PIFUs will not be forced on you but will likely be offered to you as an alternative to routine follow-up. It will be up to you to choose whether or not you want to join the experiment. 

If PIFUs are going to work, we will need a well-curated dashboard to check in on patients who need pharmacovigilance and clinical and MRI monitoring. I agree this can be done remotely, but it will still need somebody to audit it and identify patients who need attention, for example, abnormal blood tests or possible treatment switches due to active disease on MRI. 

Another issue is that remote monitoring, which can potentially be more sensitive than an annual EDSS, T25W (25-foot walk), 9HPT (9-hole peg test) and SDMT (symbol digit modality test) monitoring, may detect smouldering MS, i.e. worsening disability without a relapse, with all its implications. So contrary to expectations PIFUs with a remote monitoring system may create extra work rather than reduce it. This is called the law of unintended consequences. I am not saying this is not a reason for not instituting a system of PIFUs, but we must prepare for doing the opposite of what is intended.  

I think MS-Seflie and the about-to-be-launched MS-Selfie Website are very timely and allow pwMS another route to self-manage their MS. Using MS-Selfie, pwMS should be able to interrogate their symptoms and hopefully be able to understand what is happening to them and make a decision on whether or not to see their HCP for advice. If the problem is not urgent, they could ask a question via the MS-Selfie comment section or email me a more detailed description of their problem, and I will get back t them in the form of an anonymised MS-Selfie case study. This is not far-fetched. It is happening already.

A few years ago, I created a fictionalised version of an MS management application for pwMS, which I called MS-Connect. When we tried to raise money to develop and make MS-Connect App a reality, we could raise money. I think the vision that underpins MS-Connect for self-managing your MS in 2023 is as relevant today as it was when I penned MS-Connect in 2019. The only difference is that we may now embed an AI chatbot to help implement it. Do you agree or not? I would appreciate your help and collective wisdom in improving the productivity of MS-related services in the NHS. How do we implement and achieve the core standards of our “MS Brain Health: Time Matters” consensus? 

I did an MS-Selfie post on MS-Connect last February on “The future of MS care (15-Feb-2022)” those new to the platform may want to review it.

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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.