What could patient-initiated follow-up mean for patient care?

In recent years, there has been a significant increase in the number of people attending hospital as outpatients. A large proportion are for follow-up appointments (where someone returns to hospital following treatment or surgery, or to monitor a long-term condition). It has been argued that many of these are unnecessary, and provide lower clinical benefit to both patients and staff.

Improving outpatient care – especially as part of elective recovery efforts – is therefore a key priority for the NHS, with an ambition for health systems to reduce follow-up outpatient attendances by 25% from 2019/20 levels by March this year. NHS England has been trialling numerous innovations to support this, and together with the Royal College of Physicians is also developing an outpatient strategy. 

One intervention is patient-initiated follow-up (or ‘PIFU’). This allows people using PIFU to request an appointment as and when they need one, rather than following a fixed appointment schedule (such as every three months). Although the number of patients on PIFU pathways has steadily increased month on month to over 200,000 in September 2023, it is still only a small proportion of all outpatient activity, equating to approximately 3% of people attending outpatient clinics altogether. 

Within this context, the NIHR Rapid Service Evaluation Team (RSET) conducted a mixed-methods evaluation of PIFU in the NHS in England. We looked at data from NHS England and Hospital Episode Statistics, and spoke to clinical and operational staff and patients in five NHS trusts, to understand how PIFU was being implemented and the impact it was having on patients, staff and NHS services.

What did we find?

PIFU is most commonly used for short-term conditions (such as following surgery or for physiotherapy) but several trusts are expanding this to long-term conditions. PIFU is implemented differently across trusts and specialties. This means that how patients are selected for PIFU, how they are monitored and how they contact the service varies, and is often influenced by factors relating to their particular condition. For example, people on a breast care pathway we studied were also required to attend annual scans as part of their follow-up care.

Staff in trusts we spoke to talked about what helped them to implement PIFU, and what acted as a barrier (summarised below).

Because PIFU is implemented in such a variety of ways, different services will have a different impact on the use of hospital resources and patients. We were not able to investigate the impact of PIFU on patients put onto PIFU pathways because the data was not available. We were, however, able to explore the relationship with outpatient services as a whole, but since fewer than 5% of outpatients are put onto PIFU pathways, any impact would not be large.

That said, we found that trusts with a greater proportion of people on PIFU appeared to have less frequent outpatient attendance per patient, lower rates of missed appointments, but there was very little association with numbers of visits to A&E. At the individual specialty level, there were notable reductions in outpatient attendance per patient in 15 out of 29 specialties, such as gynaecology and urology. But within seven specialties (including ophthalmology and cardiology) we saw increases in attendance.

How staff felt about PIFU depended on how it was being used in their service, and how different it was from what they were doing before. Some staff had taken on significant new responsibilities to support PIFU and, in some trusts, new roles had been created for people overseeing the PIFU process. PIFU works well when patients have clear ways of contacting the service, and feel well supported by their health care team.

What does this mean for PIFU roll-out?

Our research makes several recommendations to improve how PIFU is implemented in the NHS. For example, more tailored guidance for PIFU implementation for different specialties and conditions is beneficial. NHS England has already developed guidance for specialties such as adult trauma and orthopaedic care, as well as guidance to support PIFU implementation generally. It’s important for clinical and operational teams, as well as national bodies such as royal colleges, to continue to share evidence and best practice on how PIFU can be used for different conditions and groups of patients.

It’s also important that both staff and patients understand how PIFU can benefit patients, to make sure it’s not just seen as a quick fix for improving outpatient capacity. This means sharing standardised and clear, consistent and accessible information on PIFU and its purpose, both within trusts and across the NHS as a whole. It is also important that any national drives to increase the use of PIFU do not detract from the principle of providing care that is most appropriate for individual patients. Patients need to be clear on how PIFU works and be confident that they will be able to speak to someone when they need to, and be provided with support in a way that works for them.

The long-term impact of PIFU on outpatient appointments is uncertain. For example, we heard from staff that when appointments do happen, they could be more complex and time-consuming. As such, if more people are placed on PIFU in the future, other staffing arrangements may be required to support it, and consideration will also need to be given to the potential impact on staff workload.

But there may also more opportunities for using staff differently, given appropriate triaging – this includes more appointments with nurses, or other qualified staff to respond to people’s needs, rather than with the hospital’s doctors.

Although our evaluation identified valuable learning for PIFU, there are still significant gaps in the evidence. Based on our research, we are developing a guide to support trusts evaluating their own PIFU services at a local level – this should focus particularly on understanding how PIFU affects different groups of patients and its potential impact on health inequalities.

What does this mean for patient care more broadly?

PIFU is not being implemented in isolation and must be considered as part of a wider approach to patient care. The Patients Association has been supporting NHSE and the Royal College of Physicians with their work to develop an outpatient strategy. They have identified several priorities for patients, many of which were reflected in our work. This includes making sure that services are properly coordinated and that health care professionals communicate better across primary care and outpatient services.

All these things are important for PIFU to work well, requiring better engagement across the whole health care system, not just within outpatient departments. This includes better understanding of 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, as well as third sector organisations.

PIFU is being rolled out while there are significant pressures on NHS services. Public satisfaction with the NHS is currently at its lowest level ever, with waiting times for appointments a key factor. This was noted by staff in our research as causing significant anxiety among patients who were concerned that without having a routine follow-up appointment scheduled, they wouldn’t be able to get support if they needed it and so were anxious about being on PIFU.

NHS pressures may also mean it will be some time before any impact of PIFU on overall outpatient capacity is seen – it’s not a silver bullet. Despite this, when PIFU is implemented well, it can bring benefits to how patients and staff experience outpatient care and on the effective use of limited NHS capacity. Sharing our learning, along with a better understanding of the value of PIFU for different types of patients and strategies for overcoming the barriers to success, will be an important part of achieving these benefits. This would be good news for patients, staff and services.

*This study is funded by the NIHR Health and Social Care 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. These are preliminary findings that have yet to be peer reviewed. 

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

Hospital Episode Statistics and Emergency Care Dataset data (year range 2017/18-2022/23) Copyright © (2024), NHS England. Re-used with the permission of NHS England. All right reserved.