Patient-initiated review: A promising or problematic reform measure?

The roll-out of patient-initiated review is part of the HSE’s scheduled care transformation programme.
Catherine Reilly takes a closer look at what it involves and the possible impacts

Patient-initiated review (PIR) is one of the measures in the HSE’s “scheduled care transformation programme”, which was established in 2020 to provide a “coherent and co-ordinated” process towards achieving access targets.

The challenge remains seismic. Over half a million adults and children were on outpatient waiting lists alone in January, with 138,960 people waiting six-to-12 months; 47,557 waiting 12-to-18 months; and 54,802 for over 18 months. The Sláintecare maximum wait time target for a first outpatient appointment is 10 weeks.

In June 2022, the HSE board received an update on scheduled care reforms, including PIR. It heard that PIR involved a patient, caregiver or family member initiating an outpatient review appointment rather than the appointment being automatically scheduled.

 “We currently see c2.2 million review outpatient appointments and 750,000 waiting list related new appointments,” stated the briefing slides. “This process has proven successful in several leading international health systems and has the potential to significantly reduce the number of review appointments, resulting in increased capacity to deliver new outpatient appointments.” Family-initiated review was being tested in Children’s Health Ireland (CHI), the HSE board was informed.

According to the briefing slides, PIR was “closely linked” to the development of “patient-centred booking arrangements”. This would involve an “end-to-end transformation” of booking and scheduling practices and technology systems to “enhance patient involvement and ensure patients are on the most appropriate pathway including patient choice of appointment date/time”.

The Department of Health/HSE waiting list action plan for 2023 provided some further information on plans for PIR.

“This reform initiative empowers patients to access follow-up care as required, instead of automatically scheduling a review appointment. This initiative seeks to improve patient experience, reduce the number of review attendances and increase capacity for new appointments in order to deliver reductions against the active outpatient waiting list,” according to the action plan.

It stated that a national guidance document on PIR was developed in 2022 (the HSE had not provided this document to the Medical Independent (MI) by press time).

“In 2023, the process will be scaled to a total of 22 hospital sites with initial focus on hospitals with the highest new-to-review ratios. In 2023, the approach will also be tested in community services.” The timeline for completion was December 2023.

Some €32 million in funding was approved to support PIR, the reduction of Did Not Attend (DNA) rates, and the implementation of the health performance visualisation platform, as well as to enhance capacity in paediatric orthopaedics; gynaecology; and bariatrics. A breakdown of the expenditure was not included in the action plan.

According to the HSE National Service Plan 2024, the HSE will “embed” existing “proven waiting list initiatives” to support timelier access to scheduled care with a focus on development of sustainable care models and enhanced capacity. It referred to specialty-based programmes and reform initiatives, listing PIR, a central referrals office, and advanced clinical prioritisation.

On 7 February, MI submitted questions to the HSE on PIR, but it had not responded by press time. CHI had not responded on the results of the pilot.

NHS

Elements of PIR are already used in certain specialties or disease areas in Irish hospitals – for example, advice lines through which patients can access a review appointment if necessary.

It is understood some specialist services have also piloted and introduced a PIR system independently of the HSE (see panel).

In NHS England, the expansion of formalised pathways of patient-initiated follow-up (PIFU) is a firm part of plans to address outpatient waiting lists exacerbated by the Covid-19 pandemic.

“A more personalised approach to outpatient follow-up appointments will ensure people who require a follow-up appointment receive one in a timely manner – protecting clinical time for the most value adding activity,” according to NHS 2022/23 priorities and operational planning guidance.

The NHS document stated the opportunity to reduce outpatient follow-ups would differ by Trust and specialty, and PIFU was among the supporting measures. It stated PIFU should be expanded “to all major outpatient specialties” and set a target of “moving or discharging 5 per cent of outpatient attendances to PIFU pathways by March 2023”. This target was not met and it is understood the figure is around 3 per cent on average.

In January 2024, a mixed-methods evaluation study of PIFU outpatient services in NHS England was published by a rapid service evaluation team of researchers from University College London and the Nuffield Trust. The research was funded by the National Institute for Health and Care Research (NIHR) and the preliminary findings are available at https://www.nuffieldtrust.org.uk/research/an-evaluation-of-patient-initiated-follow-up-pifu-outpatient-services-in-the-english-nhs .

According to the research, PIFU was most commonly used in short-term pathways (eg, physiotherapy or following surgery), but there were examples of use for long-term conditions.

Where PIFU had been implemented successfully, enablers included conditions where symptoms and deterioration were easy to identify, clinical engagement, supporting guidance, champions, dedicated staff capacity, and flexible recording systems

A wide variety of PIFU models were used in terms of patient selection, monitoring, and discharge. The nature of the condition was a key influence as to how PIFU was implemented.

“Where PIFU had been implemented successfully, enablers included conditions where symptoms and deterioration were easy to identify, clinical engagement, supporting guidance, champions, dedicated staff capacity, and flexible recording systems,” found the researchers.

“Barriers to successful implementation included patients not being aware they were on PIFU, perceptions of challenges accessing care, staff resistance, competing priorities and limited capacity to dedicate to PIFU, a lack of engagement with primary care and challenges updating Electronic Patient Record (EPR) systems to record PIFU activity.”

The researchers stated there are data limitations in evaluating PIFU in NHS England. For example, national patient-level data does not currently record which patients are on PIFU pathways and there is uncertainty about the completeness of the available PIFU data. The team further noted that existing data is not currently able to capture wider consequences such as the impact on primary care.

Using the best available data and statistical analyses, however, they produced a number of interesting findings.

The researchers analysed 56.7 million attendances in 29 clinical specialties. They reported that every 5 per cent point increase in patients on PIFU pathways appeared to be associated with a 2 per cent reduction in the frequency of outpatient attendance per patient.

At specialty level, higher rates of patients on PIFU pathways were associated with statistically significant reductions in outpatient attendance per patient in 15 out of 29 specialties (for example, in dermatology, ENT, gynaecology, rheumatology, and neurology). However, in seven specialties, higher PIFU rates were associated with a higher frequency of attendances (including ophthalmology, cardiology, and respiratory medicine).

There remains “a lack of reliable information” on how many people were getting back in touch with PIFU services and whether this was appropriate. The evaluation team’s interviews with hospital staff revealed “mixed” views on whether patients were contacting services when this was needed.

Work is ongoing in NHS England to include PIFU status in hospital episode statistics, which will make it easier to evaluate the impact of PIFU on outpatient attendance at patient level. 

Currently, the long-term impact of PIFU on outpatient appointments is uncertain and rates of patients on PIFU are small in comparison to all outpatient activity, outlined the evaluation team.

Data collection within services needs to be improved to enable effective evaluation of PIFU and other outpatient innovations. This should include more patient-centred outcomes and monitoring of health inequalities, advised the evaluation team.

“Further quantitative evaluation of measurable outcomes of PIFU should be undertaken that includes the impact on patients and staff workload. Analysis of patient outcomes (including analysis of inequalities) will be enhanced when the identification of patients on PIFU pathways is more widely reported within hospital patient administration systems and thus linkable to other secondary care events.”

More research on patient views and experiences of PIFU, comparing shorter-term and longer-term pathways, is also recommended.

“PIFU must be considered as part of a wider approach to patient care including its interaction with other interventions such as advice and guidance and self-referral. Engagement with all parts of the system is an important part of this and should be a focal point of the expected outpatient strategy.”

Professional bodies

The NHS has published generic guidance on implementing PIFU, as well as a number of specialty specific guides.

A spokesperson for the British Association of Dermatologists (BAD), which was involved in the process of developing NHS guidance on PIFU in dermatology, commented: “Patient initiated follow-up is key to personalising outpatient care, and by enabling patients to have more control over when they receive care, can reduce unnecessary follow-up appointments and make best use of clinical time.

“PIFU initiatives for dermatology are contained in the BAD’s guidance for setting up PIFU services for people with skin conditions, to assist departments with identifying patients who are suitable for this option. This is not something new to dermatology services, but provides a formalised approach to demonstrating this to NHSE [NHS England].

“PIFU does not reduce follow-ups in dermatology, but provides a more direct route of access to some patients when their skin conditions relapses.

“As a new initiative, NHSE has no data published to show the number of patients using PIFU. We are yet to see outcomes from service users and the impact this has had on dermatology departments.”

Mr Mark Bowditch, Vice-President of the British Orthopaedic Association (BOA) and Chair of the BOA orthopaedic committee, informed MI: “PIFU should not be used as a waiting list management tool or a substitute for discharging patients when clinically appropriate to do so. Appropriate resourcing should be considered to ensure available clinical and administrative time is adequate to fully support the pathway.”

The BOA has endorsed NHS guidance on implementing PIFU in adult trauma and orthopaedic secondary care pathways.

Rheumatology

Dr Mark Perry is a Consultant Rheumatologist at University Hospitals Plymouth (UHP) NHS Foundation Trust and member of the British Society for Rheumatology’s (BSR) clinical affairs committee. He has many years of clinical and research experience in the area of PIFU. 

The UHP rheumatology team developed a patient-focussed and evidence-based approach to clinic provision in response to an overstretched service during the 2000s.

From 2009 to 2011, the team designed a PIFU model of care in collaboration with stakeholders including management, clerical staff, and patient representatives. The PIFU service, which locally is called ‘direct access’ (DA), started with a well-defined cohort of 300 adults with established rheumatoid arthritis.

Since the team’s published evaluation (Child 2015, Goodwin 2016), the service has broadened its scope, and further refined and standardised processes. Today, about half of the 6,000 patients under rheumatology care at Plymouth are on the DA pathway. Most have an established inflammatory arthritis (suitability criteria include a diagnosis of 1.5-to-two years or more and an arthritis that is stable or in remission). Going onto the DA pathway is reached through shared decision-making between the patient and clinical team.

A case study (dated 2022) authored by the team for Future NHS describes the evolution of the DA rheumatology service. The case study, standard operating procedure, and other resources for patients and healthcare professionals are available on the UHP website (Welcome to the Rheumatology Service | University Hospitals Plymouth NHS Trust (plymouthhospitals.nhs.uk )

The case study outlines the methods used to provide patient education, which now includes a YouTube video (the case study underlines that this format may not be appropriate for all patients). The team seeks to introduce DA to patients in stages, starting with a discussion of the concept and continuing at a rate appropriate to the individual, and this is usually over more than one and sometimes several contacts.

Dr Perry said PIFU is not a ‘magic bullet’, but it has “transformed” the operation of the rheumatology service and overall been positively received by patients and clinicians.

“We end up with clinicians coming out of clinics having felt they’ve made a difference because they have seen people at a point of need,” Dr Perry told MI. “We have patients who are happy because, by and large, they are seen within two weeks and they are able to get an answer to their question….” In addition, there may be a period of years where a patient does not have to visit the clinic in-person and therefore avoids the stresses of an unnecessary hospital visit.

Periodic patient reviews are built into the DA pathway and can occur in-person or virtually if appropriate. In the intervening periods, patients can contact an advice line/email managed by specialist nurses. A request for a consultant review (in-person or virtual) is typically facilitated within two weeks.

Ensuring the efficiency of the advice line and timely PIFU appointments are key to building and reenforcing patient trust in the process, according to Dr Perry.

There were significant barriers to overcome in establishing the service, including NHS funding mechanisms. There was also the jarring concept of keeping some appointment spots free until two weeks prior to the clinic and then attempting to fill them if they were vacant. This was in the context of a large overall waiting list at the time. As DA has become embedded in overall service provision, far fewer appointments are required for the number of people on the pathway as they become more confident in providing self-care and in the responsiveness of the service.

The team’s case study states that PIFU is primarily about improving and utilising self-care. One of the consequences may be freed-up capacity to provide urgent care, but “the predominant purpose should be to facilitate people to provide self-care”.

MI asked Dr Perry if the pathway had reduced DNAs and created capacity to see new and urgent appointments.

Dr Perry believed it had done so on both counts, but also noted the difficulty in disentangling the impact of PIFU from “a whole load of other interventions that all happen at the same time and implementing PIFU is a complex intervention”. Given the nature of triggering a DA appointment, it would also be unusual for a patient to fail to attend, he added.

In terms of resources to implement DA, a start-up grant resourced an additional half-time nursing specialist for a year to support patient education and build trust regarding the process. However, DA is now a standard part of the running of the rheumatology service.

According to the case study, anecdotal reports and testimony suggested strongly that local GP colleagues appreciated the support that the rheumatology team can give to patients through the DA service, as indirectly this plays a role in supporting GPs and their work pressures.

A major priority for Dr Perry and the team is ensuring that no patient is marginalised by the DA process. He notes that a patient’s suitability for the pathway can change due to their life circumstances. Dr Perry emphasises the issue of potential marginalisation in his key advice to the Irish health system.

“The people for whom it is not going to work sometimes have got quite a quiet voice,” he said. “When it works well… it is brilliant… I would also say it doesn’t work for everybody. There needs to be an open conversation as a health community to ensure that disadvantaged communities aren’t further disadvantaged by the well-meaning, but misguided intentions that PIFU is going to solve everything.”

Dr Perry also advises that care is taken to ensure the implementation process is well thought out. Centres with a less rigorous approach have highlighted a loss of trust when a PIFU system fails. PIFU should start with a patient population where it is most likely to succeed, stated Dr Perry.

Alongside colleagues in the BSR, Dr Perry is involved in an upcoming multi-site intervention study, which will examine in more detail the impact of PIFU on rheumatology services and patients. This research is sponsored by the NIHR.

The NHS has published guidance on PIFU in adult rheumatology services in consultation with BSR clinical affairs committee.

Dermatology

According to the NHS guidance for dermatology specialist services, PIFU is not a new concept for the specialty. “Historically many departments offered open access follow-up, particularly for people with long-term skin conditions such as psoriasis and eczema; the process often linked to a nurse-led helpline.”

However, in recent years, commissioning and contracting arrangements had made it more difficult to offer open access follow-up. “Patients are now often discharged from specialist care at the end of treatment and then need to obtain a new referral and re-join the routine waiting list when their skin condition flares up.” According to the guidance, personalised care and PIFU provides an opportunity to create “a robust process” to ensure people can access timely specialist dermatology care as and when they need it.

People most likely to be suitable include those with long-term conditions such as psoriasis and eczema who are capable of effectively managing their condition and feel confident in noticing and acting on changes in their symptoms and initiating an appointment.

These skin conditions can flare up unpredictably and prompt access to specialist care will ensure swift control of the disease.

Other potentially suitable patients are those who have been assessed by a specialist and started treatment where there is flexibility about the need for and timing of a review appointment. Generally, they will have a moderate inflammatory skin disease that is controlled with topical treatments.

Consultant Dermatologist Dr Julia Schofield is Vice-Chair of the Psoriasis Association, the UK’s leading national charity and membership organisation for people affected by psoriasis and psoriatic conditions.

She informed MI: “Historically it’s been difficult for people with psoriasis to re-access specialist services after they have been discharged back to primary care. Often this has meant a new referral back to the specialist when the skin condition flares up followed by a long delay to be seen again as a new patient. PIFU provides a flexible way for patients to stay ‘on the books’ of the specialist service so that they can re-access care in a timely fashion as and when necessary without needing a new referral.”

Dr Rachael Robinson is Consultant Dermatologist and Clinical Lead for the dermatology department at Harrogate and District NHS Foundation Trust.

The department established a PIFU pathway just over a year ago and it has been working well, Dr Robinson told MI.

Dr Robinson said placing a patient on the PIFU pathway is a shared decision between the patient and clinical team and she echoed comments made by Dr Perry that not all patients are suitable.

She also emphasised the importance of clear communication and a documented pathway of what happens when a patient contacts the service.

Dr Robinson explained that patients can receive either a routine or urgent PIFU appointment. The department utilises a digital image capture system whereby the patient can send in a photograph of their flare-up. The team can then determine if the patient needs to be seen within days, two-to-three weeks, or indeed whether the issue can be managed over the phone. “We give clear documentation in the patient letter from the clinic to the GP, which goes into the NHS app, so the patients can see the letter as well – about what the PIFU is for, how they can use it and we also give them information on how to take a photograph [suitable for the clinical team to interpret]….”

She added: “We have got an acute clinic, which we run once a week and we block off some of those appointments for PIFUs….”

A common reason for patients activating a PIFU appointment is reactions to treatments used for actinic keratosis and Bowen’s disease. “Most of the time patients don’t need to come back [following this treatment]. But some patients get quite a florid reaction, and they get concerned, and they do use their PIFU for that.”

PIFU has helped with the smooth running of the clinics, it has made the service more responsive, and has provided reassurance to patients, although it has not increased capacity, indicated Dr Robinson. “The biggest fear for patients is they get discharged and then they have to go back to their GP, and then they struggle to get an appointment, and then they have to wait six months to get back into the system; that is their biggest fear. Having a PIFU for six months after they have finished a treatment, for instance for acne, does give them reassurance,” said Dr Robinson, who noted that, in this example, PIFU appointments were rarely activated.

However, Dr Robinson added that implementing the pathway is an evolving process. An upcoming audit will ascertain the impact of the pathway to date and the level of additional work relating to reassurance.

“But generally speaking, it is working well,” she noted. Dr Robinson also confirmed that no additional resources had been provided to implement PIFU within Harrogate’s dermatology service.