Patient-initiated follow-up: does it work, why it matters, and can it help the NHS recover?

The NHS’s elective recovery strategy includes a target of moving 5% of outpatient attendances to patient-initiated follow-up (PIFU) pathways by March next year. But what exactly is PIFU? As the NHS prepares to scale it up nationally, Sarah Reed and Nadia Crellin explain more about what it is, the problems it could solve, and what is known so far about how well it works.

Explainer

Published: 04/08/2022

‘Patient-initiated follow-up’ (or PIFU, for short) is not a new idea and has been referred to in different ways over time, such as open-access appointments, self-managed follow-up, and see-on-symptom appointments.

However, this approach has been given renewed attention given rising waiting times and the backlog of care that has built up throughout the Covid-19 pandemic. The NHS’s elective recovery strategy set the goal of reducing outpatient follow-ups by a minimum of 25% (against 2019/20 activity levels) and moving 5% of outpatient attendances to PIFU pathways by March 2023.

As the NHS works to scale up PIFU nationally, we explain what this approach is, the problems it’s trying to solve, and what we know so far about how well it works.

What is patient-initiated follow-up?

PIFU is a way of organising care that gives patients and their carers more flexibility over the timing of their follow-up appointments.

Under traditional care models, patients with chronic conditions or who have had surgery or treatment are typically offered hospital follow-up appointments following a routine, pre-defined or “fixed” schedule (e.g. every three, six or 12 months). Under PIFU, patients or their carers initiate care as and when they need it, rather than being automatically called back for an appointment.

Patient-initiated pathways can take many forms and will require different design and implementation choices depending on a range of factors. For example, a patient-initiated pathway for a patient with a chronic symptomatic condition might have very different requirements and considerations than one for a patient requiring follow-up care after surgery. Other considerations will also apply depending on whether a patient has multiple or a single condition, the degree of complexity in a patient’s life, and the level of risk involved.

 

What problem is PIFU trying to solve?

One of the key goals of PIFU is to better match clinical resources with patient need – an ever-growing challenge in the NHS as the number of patients waiting for specialist care continues to grow.

In England, the total volume of outpatient hospital appointments increased by two-thirds between 2008/2009 and 2019/20 to 125 million a year, with follow-ups accounting for two-thirds of all appointments. This is the largest increase in activity of any hospital service, and long waiting times, delayed appointments and rushed consultations have become increasingly common. With waiting lists for specialist treatment now standing at over 6 million – an increase of over a third since February 2020 – the question of how to prioritise clinical time has only grown more urgent.

While there has been a huge growth in the number of outpatient appointments, there are questions over whether they have all been clinically needed. Under current practice, the timing of follow-up care is not necessarily decided by a change in a patient’s condition, or when a patient requires or wants extra support. Conversely, when a patient’s symptoms or circumstances do change, they may experience long waits for an appointment as capacity has been devoted to routine follow-up.

By giving patients more control over the timing of their care, there is hope that PIFU can help reduce unnecessary regular follow-up appointments and the number of missed or cancelled appointments, while freeing up capacity for other patients.

How might PIFU pathways vary?

While all services will likely involve the stages illustrated in the PIFU pathway above (i.e. patient selection and onboarding, escalation and triage, safety net and monitoring, and patient discharge or review), the specific characteristics of services will vary. For example, services might make different choices in:

  • How patients are selected and the criteria used to determine whether a patient is a good fit for PIFU
  • What education and training patients and carers receive before joining the pathway, and what level of self-management support is provided to help people manage their care or know when to contact services
  • Whether and how fluctuations in a patient's symptoms or conditions will be monitored (e.g. patient questionnaires, remote monitoring technology) and how technology might enable this
  • How patients or carers will contact the service with concerns or questions, and which staff will manage those requests (e.g. nurses, administrative staff)
  • How clinic slots will be managed and prioritised to ensure capacity for incoming requests
  • How safety nets will work, i.e. how appointments will be triggered and patients contacted if they have not been seen within a reasonable clinical timeframe
  • Which factors will be considered to determine when a patient should be discharged from the PIFU pathway or go back to fixed appointment schedules.

The choices made within each of these areas will vary for several reasons, including patient preferences, condition, workforce, technological, organisational and other resource factors.

What do we know so far about how well PIFU works, and will it help the NHS recover?

While there is some promising evidence that PIFU might result in fewer overall outpatient appointments compared to fixed appointment schedules, results are mixed across studies.

Our rapid review identified 17 studies published since 2015 that examined the effects of PIFU on appointment volumes, of which 15 looked directly at the effects of PIFU on outpatient activity (see our briefing for full details, with a breakdown of the studies below). Among these, eight showed that PIFU led to a statistically significant reduction in outpatient appointments compared to fixed follow-up, with seven showing no difference between approaches. We also know very little about how PIFU affects overall costs due to a limited number of studies and highly variable results across them.

When it comes to patient outcomes, PIFU appears to have had little or no effect on clinical outcomes or quality of life, but might have a small beneficial impact on patient satisfaction. This suggests that PIFU might be able to reduce the number of outpatient appointments that a patient has without any detrimental knock-on effects to quality, safety or experience.

Across the board, most studies we rated as low quality, or had variable outcomes. Although most of the PIFU studies were randomised, design issues are still common, meaning that findings are highly context specific. The studies identified in our review involved only eight specialties, and over half (10/17) were conducted in countries outside of the UK, limiting our understanding of how PIFU might work in the NHS context.

The box below provides a breakdown of the studies included in the evidence review.

PIFU model (17 studies)
  • 5 rheumatology, 7 oncology (4 gynaecological, 3 gastroenterology), 1 dermatology, 2 neurology, 2 endocrinology
  • 14 involved a designated nurse hotline and / or patient portal to log or check results
  • 10 involved an education component
  • 10 had safety netting / standard review appointment(s)
  • 9 involved routine monitoring or surveillance of a patient's condition
  • 7 guaranteed an appointment within a certain time
  • 7 involved triage to prioritise how patients' requests were managed/escalated.
Outpatient service use (15 studies)
  • 8 studies reported a significant reduction in outpatient appointments compared to fixed follow-up. However, two of these studies also reported an increase in phone contact with the service.
  • 7 studies reported no impact on outpatient visits (compared to fixed follow-up).
Other health service use (7 studies)
  • 5 studies explored primary care activity, of which 2 found a reduction in GP visits with PIFU relative to usual care.
  • 2 studies explored wider hospital activity, showing no significant impact on hospital contacts or admissions, but one study did find a significant reduction in A&E visits.

Health service cost (6 studies)

  • Of the 3 randomised studies that explored cost, 2 found no difference compared to fixed follow-ups and the other found higher service costs.
  • 3 studies reported large reductions in costs compared with estimated costs of standard care.
Patient outcomes, including clinical outcomes, satisfaction and quality of life (13 studies)
  • Of the 13 studies that looked at patient experience and quality of life, only five found that PIFU had a statistically significant beneficial impact for patients.
  • 9 studies explored clinical outcomes and all found no statistically significant impact of PIFU.

Where is more research needed and where might there be risks?

As PIFU is set to be scaled up in England, more research is needed to understand what impact it will have on patients, and whether it will help reduce unnecessary appointments as intended in the NHS context.

One major gap in the research is whether and how PIFU might affect health inequalities. Most studies limited participation to low-risk patients with higher levels of agency to be able to initiate contact – but with few details on how these factors were assessed and determined, and whether results differed by ethnicity, race, sex, gender identity or other factors. As PIFU is scaled up in the NHS, it will be important to understand which patients are being selected for PIFU and how their needs are being responded to or escalated, and whether there are any unwarranted differences by patient population.

We also need to better understand what impact PIFU has on other health services, and whether there might be any unintended consequences such as shifting more work to other hospital, primary or community care services. It is unclear from the available evidence whether any cost savings achieved in studies from reducing outpatient appointments have been outweighed by activity elsewhere, such as educational sessions or increased support from nurse practitioners via patient hotlines.

This is why the Rapid Service Evaluation Team will be working with NHS England to conduct a rapid evaluation of PIFU, to close some of these gaps in the research and understand how implementation might evolve.

*This study is funded by the NIHR Health Services & Delivery Research programme (RSET Project no. 16/138/17). The views expressed are those of the authors and not necessarily of the NIHR or the Department of Health and Social Care.

The Rapid Service Evaluation Team (‘RSET’) comprises health service researchers, health economists and other colleagues from University College London and the Nuffield Trust who have come together to rapidly evaluate new ways of providing and organising care. 

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