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Patient Initiated Follow-up: how it works and why it matters?

In this blog post we go deep on how to apply Patient Initiated Follow-up (PIFU) as a strategy to empower patients to detect red flags and help providers to identify early signs of decompensation, reducing unnecessary appointments and preventable hospitalizations.

Matilde Ferreira

Matilde Ferreira

March 1, 2023 · 8 min read

Mother and sick daughter
Health systems are in the spotlight, people have never demanded so much from the health sector, providers are under pressure to better match clinical resources with patient needs and meet evolving customer expectations to thrive in the rapidly changing healthcare landscape. 
The topic that brings us here today is Patient Initiated Follow-up (PIFU) as a strategy to reduce unnecessary appointments, missed or cancelled appointments and preventable hospitalizations. 
Because demand won’t stop, and resources will not follow the same rising trend. 

More patients, less healthcare workers, missed opportunities to improve outcomes and new expectations shaping healthcare systems 

In the background, a continuous growth of the global population fueled by a progressively longer life expectancy grows healthcare needs in volume, which mostly remain unaddressed: 
  • The world’s population aged 60 years and older is expected to total 2 billion in 2050, almost duplicating the current figures, and representing an additional risk factor for multiple chronic conditions.1
  • The number of patients with multiple diseases is projected to demand 40 million additional health workers globally by 2030.2
  • In Europe, more than 40% of doctors will retire in the next 10 years.3
At the same time, the United Nations and World Health Organization call for action towards effective universal health coverage, health, and well-being for all, urging transformative redesign of healthcare systems originally designed to deal with acute conditions. The hard truth is that purely time-based, sequential, and standardized approaches are not adequate to meet today's needs concerning chronic diseases management thus leading to inappropriate use of health resources and financial sustainability challenges: 
  • 25% of hospitalizations could be avoided with timely interventions4 and around 40% of high-frequency ED users report chronic pain.5
  • Feasibility studies showed that 70% of follow-up appointments could be managed by telephone or video or did not need to happen at all.6 
  • 3.5 million potentially preventable adult inpatient stays accounted for $33.7 billion in aggregate hospital costs in the USA.7  
  • In Portugal, the total estimated cost associated with avoidable hospital admissions was €250 million, corresponding to 6% of the total budget of public hospitals (2015).8 
  • In the UK, the top 5% of users of care services represent annual costs 20 times higher than other patients, but around 10% of those costs are potentially preventable.9
Finally, new customers’ expectations aligned with Huber et al. definition of health as “the ability to adapt and to self-manage, in the face of social, physical and emotional challenges”,10 stress the traditional doctor-patient relationship and push providers to try non-traditional strategies and services to improve navigation throughout the system. In fact, recent insights from global market research and consulting companies converge on pointing digital capabilities and ease of navigation as factors increasingly influencing who patients choose as a provider​s.  

Patient Initiated Follow-up: a game changer 

Let’s put it plain: Patient Initiated Follow-up is about giving patients the flexibility and convenience to report symptoms exacerbations and arrange their follow-up appointments when they most need them. It’s about “making appointments more responsive to patient need”.11 An absolutely game changer because, as flawlessly described by the Nuffield Trust:  

“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.” 12

As one used to manage chronic diseases – especially those characterized by acute exacerbations – know, acute episodes don't happen at a set date and time. So, the likelihood of patient’s decompensation between two visits scheduled following a fixed follow-up approach is higly variable and unpredictable.
By empowering patients to accurately identify red flags and giving them the ability to report them, safe and conveniently, to the clinical team in charge of their care plan, there is hope that PIFU can help:   
  • Patients access more convenient, and faster care when they most need it, while reducing the likelihood of experiencing poorer outcomes and unnecessary commuting to attend avoidable follow-up appointments. 
  • Health teams early identifying red flags and perform timely interventions, while reducing the time spent with stable patients, thus freeing up capacity for other patients. 
  • Providers reduce the costs of missed or cancelled appointments, and high-cost preventable care, while improving allocative efficiency by prioritizing teams focus on patients that most need. 
  • Health systems increase and assure health care access and coverage, reducing health inequalities. 

One-million-dollar question: does PIFU work?  

A report by the Nuffield Trust examined the effects of PIFU on service use, costs patient experience and/or clinical outcomes. 
  1. Outpatient capacity: several studies, ranging geographically from Denmark to UK, and clinically from rheumatology to oncology, show that PIFU led to a statistically significant reduction in the number of outpatient appointments compared with fixed follow-up.13-20 
  2. Health service costs: PIFU was associated with a 90% reduction in costs compared with fixed appointment schedules, estimated costs based on typical standards of care or national guidelines.16, 21, 22
  3. Patient outcomes: evidence suggests that PIFU might be able to reduce the number of outpatient appointments a patient has without any detrimental knock-on effects on quality, safety or wellbeing, while in particular conditions - such as rheumatoid arthritis, hemifacial spasms, rectal cancer and type 1 diabetes - it a statistically significant beneficial impact for patients, concerning quality of life. 13, 20, 23-25

Patient-Initiated follow-up with UpHill: mutual empowerment 

Although the ability to have a patient initiating an appointment when he needs one is intrinsically a good thing – PIFU is not a bed of roses.  
First because this strategy may not be appropriate either for all patients nor for all conditions. Secondly, it must be ensured that health teams have all the tools and information needed to effectively reduce care gaps and reduce inefficiencies, while enabling their effectiveness and productivity.  
While many patients frequently self-manage their condition and are on top of their own health status, others might not be sufficiently informed to recognize triggers or changes in their condition. That is to say, PIFU requires supporting patients to self-manage, giving them confidence to act on changes in their symptoms. 
On the other hand, even with PIFU there will always be the need to stratify patients and adjust their care journey according to their risk. That is to say that not all the red flags reported should trigger an in-person appointment. So, healthcare professionals should also be provided with the tools to accurately decide how to proceed, preferentially without additional workload.  

How does UpHill help? 

  • Patient education and empowerment through a dedicated portal, to enable signs and symptoms identification, care navigation and plan adherence. 
  • Patient autonomy to report disease deterioration, using an omnichannel virtual assistant. 
  • Automatic patient stratification through validated questionnaires and scores, that routes the patient to the right setting depending on risk. 
  • Next actions suggestion based on a pre-validated decision support system. 
Patient Initiated Follow-up approach enables shared decision-making, reduces unnecessary appointments, and preventable hospitalizations. It is about mutual empowerment since it provides patients with the opportunity to take their health into their own hands, and healthcare professionals with the capacity to provide care to the patients that need the most, with more confidence.  
Reach out to us to know more about ongoing projects and discuss how our solution can address your needs. 

References

  1. Ageing and health. (2022, October 1). Retrieved February 28, 2023, from https://www.who.int/news-room/fact-sheets/detail/ageing-and-health 
  2. Boniol M, Kunjumen T, Nair TS, et al The global health workforce stock and distribution in 2020 and 2030: a threat to equity and ‘universal’ health coverage? BMJ Global Health 2022;7:e009316. 
  3. Tercatin, R. (2022, September 15). Shortage of health workers is a 'ticking time bomb' – even in Europe. Retrieved February 28, 2023, from https://healthpolicy-watch.news/shortage-of-health-workers-is-a-ticking-time-bomb-even-in-europe/ 
  4. Reducing preventable admissions to hospital and long-term care – a high impact change model. (n.d.). Retrieved February 28, 2023, from https://www.local.gov.uk/our-support/partners-care-and-health/care-and-health-improvement/working-hospitals/reducing-preventable-admissions
  5. Shergill, Y., Rice, D., Smyth, C., Tremblay, S., Nelli, J., Small, R., Hebert, G., Singer, L., Rash, J. A., & Poulin, P. A. (2020). Characteristics of frequent users of the emergency department with chronic pain. CJEM, 22(3), 350–358. https://doi.org/10.1017/cem.2019.464 
  6. Using digital follow-up assessments to reduce unnecessary face-to-face appointments. (n.d.). Retrieved February 28, 2023, from https://transform.england.nhs.uk/key-tools-and-info/digital-playbooks/cancer-digital-playbook/using-digital-follow-up-assessments-to-reduce-unnecessary-face-to-face-appointments/
  7. McDermott KW (IBM Watson Health), Jiang HJ (AHRQ). Characteristics and Costs of Potentially Preventable Inpatient Stays, 2017. HCUP Statistical Brief #259. June 2020. Agency for Healthcare Research and Quality, Rockville, MD.
    www.hcup-us.ahrq.gov/reports/statbriefs/sb259-Potentially-Preventable-Hospitalizations-2017.pdf. 
  8. Rocha, J.V.M., Marques, A.P., Moita, B. et al. Direct and lost productivity costs associated with avoidable hospital admissions. BMC Health Serv Res 20, 210 (2020). https://doi.org/10.1186/s12913-020-5071-4 
  9. Average annual costs per patient for the top 5% of patients are over 20 times higher than all other patients. (2019, October 29). Retrieved February 28, 2023, from https://www.health.org.uk/news-and-comment/charts-and-infographics/high-cost-high-need-patients 
  10. Huber M, Knottnerus JA, Green L et al. . How should we define health? BMJ 2011;343:d4163 10.1136/bmj.d4163
  11. Richards, R., & Reed, S. (2020, January 29). How can unnecessary outpatient appointments be reduced? Retrieved February 28, 2023, from https://www.health.org.uk/news-and-comment/blogs/how-can-unnecessary-outpatient-appointments-be-reduced 
  12. Reed, S., & Crellin, N. (2022, August 04). Patient-initiated follow-up: Does it work, why it matters, and can it help the NHS recover? Retrieved February 28, 2023, from https://www.nuffieldtrust.org.uk/resource/patient-initiated-follow-up-does-it-work-why-it-matters-and-can-it-help-the-nhs-recover
  13. Ryg DN, Gram J, Haghighi M and Juhl CB (2021) ‘Effects of patient-initiated visits on patient satisfaction and clinical outcomes in a type 1 diabetes outpatient clinic: a 2-year randomized controlled study’, Diabetes Care 44(10), 2277–85. 
  14. McBain H, Shipley M, Olaleye A, Moore S and Newman S (2016) ‘A patientinitiated DMARD self-monitoring service for people with rheumatoid or psoriatic arthritis on methotrexate: a randomised controlled trial’, Annals of Rheumatic Diseases 75(7), 1343–9.
  15. Khoury LR, Moller T, Zachariae C and Skov L (2018) ‘A prospective 52-week randomized controlled trial of patient-initiated care consultations for patients with psoriasis’, British Journal of Dermatology 179(2), 301–8.
  16. Luqman I, Wickham-Joseph R, Cooper N, Boulter L, Patel N, Kumarakulasingam P and Moss EL (2020) ‘Patient-initiated follow-up for low-risk endometrial cancer: a cost-analysis evaluation’, International Journal of Gynecological Cancer 30(7), 1000–4.
  17. Poggenborg RP, Madsen OR, Dreyer L, Bukh G and Hansen A (2021) ‘Patient-controlled outpatient follow-up on demand for patients with rheumatoid arthritis: a 2-year randomized controlled trial’, Clinical Rheumatology 40(9), 3599–604.
  18. Jeppesen MM, Jensen PT, Hansen DG, Christensen RD and Mogensen O (2018) ‘Patient-initiated follow up affects fear of recurrence and healthcare use: a randomised trial in early-stage endometrial cancer’, BJOG 125(13), 1705–14.
  19. Balhorn J, Su'a B, Jin J, Peng SL, Weston M, Israel L, et al. Changing the routine: a move to patient initiated follow up to improve surgical outpatient clinic. ANZ J Surg. 2022;92(6):1394-400.
  20. Jakobsen I, Vind Thaysen H, Laurberg S, Johansen C, Juul T, Group FS. Patient-led follow-up reduces outpatient doctor visits and improves patient satisfaction. One-year analysis of secondary outcomes in the randomised trial Follow-Up after Rectal CAncer (FURCA). Acta Oncol. 2021;60(9):1130-9.
  21. Johnson RL, Choy C. Patient-initiated follow-up of early endometrial cancer: a potential to improve post-treatment cardiovascular risk? Arch Gynecol Obstet. 2022;305(2):431-7.
  22. Coleridge S and Morrison J (2020) ‘Patient-initiated follow-up after treatment for low risk endometrial cancer: a prospective audit of outcomes and cost benefits’, International Journal of Gynecologic Cancer 30(8), 1177–82.
  23. Khoury LR, Moller T, Zachariae C and Skov L (2018) ‘A prospective 52-week randomized controlled trial of patient-initiated care consultations for patients with psoriasis’, British Journal of Dermatology 179(2), 301–8.
  24. Goodwin VA, Paudyal P, Perry MG, Day N, Hawton A, Gericke C, Ukoumunne OC and Byng R (2016) ‘Implementing a patient-initiated review system for people with rheumatoid arthritis: a prospective, comparative service evaluation’, Journal of Evaluation in Clinical Practice 22(3), 439–45
  25. Lawes-Wickwar S, McBain H, Brini S, Hirani SP, Hurt CS, Flood C, et al. A patient-initiated treatment model for blepharospasm and hemifacial spasm: a randomized controlled trial. BMC Neurol. 2022;22(1):99.
Matilde Ferreira

Matilde Ferreira

Content Strategy & Communication Manager

Graduated in Communication Sciences, early on fell in love with storytelling. Started off as a journalist and then pivoted to the public relations world, she was always driven to craft relevant stories and bring them to the stage.

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