PATIENT PATHWAY ANALYSIS TO GUIDE PRIMARY HEALTH CARE REDESIGN AND TRANSFORMATION Applications in Bangladesh, Ghana and India © 2024 International Bank for Reconstruction and Development / The World Bank 1818 H Street NW Washington DC 20433 Telephone: 202-473-1000 Internet: www.worldbank.org This work is a product of the staff of The World Bank with external contributions. The findings, interpretations, and conclusions expressed in this work do not necessarily reflect the views of The World Bank, its Board of Executive Directors, or the governments they represent. The World Bank does not guarantee the accuracy of the data included in this work. The boundaries, colors, denominations, and other information shown on any map in this work do not imply any judgment on the part of The World Bank concerning the legal status of any territory or the endorsement or acceptance of such boundaries. Rights and Permissions The material in this work is subject to copyright. 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McCourtie/World Bank Page 24: © Rama George-Alleyne/World Bank Table of Contents Acronyms��������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������v Acknowledgements������������������������������������������������������������������������������������������������������������������������������������������������������������������vi Summary�������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������vii Introduction��������������������������������������������������������������������������������������������������������������������������������������������������������������������������������� 1 Development of the PPA Methodology������������������������������������������������������������������������������������������������������������������������������� 3 Literature review������������������������������������������������������������������������������������������������������������������������������������������������������������������ 3 Touchpoint framework�������������������������������������������������������������������������������������������������������������������������������������������������������� 5 Overview of the Three PPA Studies������������������������������������������������������������������������������������������������������������������������������������� 7 Bangladesh: Piloting of the PPA Method���������������������������������������������������������������������������������������������������������������������������� 9 Maternal care pathways in urban Bangladesh�����������������������������������������������������������������������������������������������������������10 Hypertension care pathways in urban Bangladesh��������������������������������������������������������������������������������������������������11 Diabetes care pathways in urban Bangladesh����������������������������������������������������������������������������������������������������������12 Chronic respiratory illness care pathways in urban Bangladesh��������������������������������������������������������������������������13 Ghana: PPA as Part of a Network of Practice Evaluation����������������������������������������������������������������������������������������������15 Maternal care pathways in Ghana���������������������������������������������������������������������������������������������������������������������������������15 Hypertension care pathways in Ghana������������������������������������������������������������������������������������������������������������������������16 Gujarat, India: PPA as Part of a System Assessment and Informing Service Selivery Redesign Pilots������������19 Maternal care pathways in Gujarat��������������������������������������������������������������������������������������������������������������������������������19 NCD care pathways in Gujarat���������������������������������������������������������������������������������������������������������������������������������������19 Conclusions������������������������������������������������������������������������������������������������������������������������������������������������������������������������������21 Annex 1: Long-list of Studies Identified in the 2021 Literature Review (28)�����������������������������������������������������������25 Annex 2: Citations List�����������������������������������������������������������������������������������������������������������������������������������������������������������35 FIGURES Figure 1. Summary of questions PPA can address���������������������������������������������������������������������������������������������������������� 4 Figure 2. Framework for the mapping of patient pathways������������������������������������������������������������������������������������������ 6 Figure 3. Bangladesh: Using the touchpoint framework for NCDs����������������������������������������������������������������������������� 9 Figure 4. Urban Bangladesh: Maternal care pathways�������������������������������������������������������������������������������������������������10 Figure 5. Urban Bangladesh: Hypertension care pathways����������������������������������������������������������������������������������������11 Figure 6. Urban Bangladesh: Diabetes care pathways������������������������������������������������������������������������������������������������12 Figure 7. Urban Bangladesh: Chronic respiratory illness care pathways����������������������������������������������������������������13 Figure 8. Ghana: Maternal care pathways������������������������������������������������������������������������������������������������������������������������16 Figure 9. Ghana: Hypertension care pathways���������������������������������������������������������������������������������������������������������������17 Figure 10. Ghana: Evaluating the NoP effect on health centre use through PPA�������������������������������������������������18 Figure 11. Gujarat: Maternal care pathways��������������������������������������������������������������������������������������������������������������������20 Figure 12. Gujarat: NCD care pathways���������������������������������������������������������������������������������������������������������������������������20 TABLES Table 1. Short-list of “best” patient pathway studies������������������������������������������������������������������������������������������������������� 5 Table 2. Touchpoints of care with the health system used for PPA����������������������������������������������������������������������������� 6 Table 3. Overview of the health system assessments with PPAs�������������������������������������������������������������������������������� 7 Acronyms Acronyms ACRONYM DEFINITION ACRONYM DEFINITION ANC Antenatal care PHC Primary health care HNP Health, nutrition and population PNC Postnatal care HTN Hypertension PPA Patient pathway analysis icddr,b International Centre for Diarrhoeal RMNCAH+N Reproductive, maternal, neonatal, Disease Research, Bangladesh child and adolescent health and MNH Maternal and neonatal health nutrition NCD Non-communicable disease SRESTHA-G Systems Reform Endeavours for NGO Non-governmental organisation Transformed Health Achievement in NoP Network of practice Gujarat PforR Program for results v   PATIENT PATHWAY ANALYSIS TO GUIDE PRIMARY HEALTH CARE REDESIGN AND TRANSFORMATION Acknowledgements The design of the PPA methodology and conceptualization of the studies were led by Zara Shubber, Nicole Fraser, and Ahmad Hegazi (World Bank) with the country analyses conducted by a team comprising World Bank staff and country partners. The team would like to express its sincere gratitude to the many contributors to the PPA studies in Bangladesh, Ghana and Gujarat State. These include, among others, healthcare providers and administrators in the public, NGO and private sectors, community leaders in the study sites, and research participants who are clients for critical maternal and neonatal health and NCD services. The study team is grateful for their time and in-depth accounts of health care experiences, and how provider choices are made in challenging life circumstances. At the World Bank, the country PPA studies were led by Zara Shubber, Nicole Fraser, Kojo Twum Nimako, Sanam Roder-DeWan and Michael Peters with technical support from Ahmad Hegazi, Neena Kapoor, Najmul Hussein, Muhammod Abdus Sabur, Katie L. McWilliams, Paul Ouma, Jessica Watson, Elina Pradhan, Navneet Kaur Manchanda, Guru Rajesh Jammy, Andrew Sunil Rajkumar, Kajali Goswami and Mengxiao Wang. A dvice and strategic guidance were provided by Patrick Mullen, Iffat Mahmoud, Bushra Alam, Atia Hossain, Rahul Pandey, Gil Shapira, Jumana Qamruddin, and Mickey Chopra. We thankkour Government partners for their leadership, technical support, and liaison with stakeholders. The collaboration with the Bangladesh Directorate General of Health Services, the Ghana Health Service,and in Gujarat the Health and Family Welfare Department and the State Health System Resource Center is gratefully acknowledged. We also thank the respective Ethics Review Committees for authorizing data collection and providing research clearance. R In Bangladesh, we thank the team at icddr,b (Shehrin Shaila Mahmood, Khadija Islam Tisha, Fahim Tazware Himel, Zahid Hasan, Sabrina Rasheed, Rumayan Hasan, Gazi Golam Mehdi, Mohammad Abdus Selim, Orin Akter, Md Golam Rabbani, Mohammad Wahid Ahmed, Zerin Jannat, Nabila Mahmood, Kamrun Nahar and Halima Akter Prova) for implementation of the PPA in Dhaka North City Corporation, Dhaka South City Corporation and Chattogram City Corporation. In Ghana, we thank IQVIA (Almas Shamim, Olaoluwa Akinloluwa, Sekinat Amoo, Franklin Glozah, Eugene Kallson, Sushant Malhotra, Kwasi Torpey, Valentine Adaiwo, Hemant Chaudhry, Naim Hage, Chijioke Kaduru and team), the University of Ghana School of Public Health (Kwasi Torpey, Franklin Glozah and team) and NTT-Data (Ramon Vila, Gonzalo Llende, Fanny Fourestier, Liliana Ramalho Inacio and team) for implementing the PPA in Hohoe, Dormaa Central, Ketu North, Tain, Ayawaso Central and Atwima Nwabiagya districts. In Gujarat, we thank the team at Sambodhi (Shubham Gupta, Rakesh Parashar, Aayushi Rastogi, Piyush Kumar, Shipra Prakash, Debrupa Bhattacharjee, Sumaira Khan, Kultar Singh and team) for implementing the PPA in Banaskantha, Dahod, Rajkot and Vadodara districts. We also gratefully acknowledge the financial support provided for the country studies by the Bill and Melinda Gates Foundation and Access Accelerated. vi Summary Summary This report summarizes the methodology, key findings and learning from three patient pathway analyses (PPA) conducted in Bangladesh cities and districts in Ghana and in Gujarat State between 2021 – 2024. The objectives of these studies were to assess patient pathways, care-seeking behaviours and experiences, quality of care and service delivery challenges, and identify opportunities for improvements through health system redesign. The studies were preceded by a literature review on PPA and the development of a methodology centered around patients’ recall of their care journeys and the health facilities or providers used at specific touchpoints in the healthcare system. All three PPAs were conducted as part of health system research informing the design and implementation of World Bank-supported ‘Program for Results’ projects in Dhaka and Chattogram in Bangladesh, Ghana, and Gujarat State. They all focused on the care continua for maternal and neonatal health (MNH) and non-communicable diseases (NCD) given the importance of accessible and interlinked primary care services for these conditions. The below summarizes the lessons learned from applying our PPA methodology in these three settings: • the methodology allows for the collection of longitudinal data on service use and can therefore complement available cross-sectional datasets; • the identification of respondents in the right locations is crucial to the validity of pathway results. For the PPAs enrolling respondents at the household level in Bangladesh and Gujarat, a screening was necessary in order to identify eligible respondents; • clear inclusion and exclusion criteria provide well-defined study populations to assess their flow through a part of the health system. For MNH, we focused on pregnant women and women who had given birth in the past 12 or 24  months, but excluded those with negative pregnancy outcomes. For NCDs, individuals were eligible based on a diagnosis of or treatment for the NCDs in question, or having a documented history of a major cardiovascular disease event; • a balance needs to be struck between recall capacity and data collected from individual participants. Pathway interviews collect retrospective data and the studies demonstrated that respondents are able to recall their care journey with some level of detail; • the start of the care pathway needs to be defined in each case, using health cards and appropriate questions; • pathway interviews can collect a rich set of data on care-seeking, e.g. i) health indicator data; ii) characteristics of respondents with specific outcomes like home delivery; iii) data on transportation modes and travel times to reach care for geospatial mapping, access metrics or carbon footprint estimation; iv) data on provider preferences, barriers and expenditures to access care; v) data on popular providers including pharmacies for better targeting of capacity strengthening and partnership-building; and vi) data on possible health system solutions; • the PPA literature review revealed the diverse approaches to tracing patient journeys. It also showed that research objectives and data availability determined which methodology was the most suitable to vii   PATIENT PATHWAY ANALYSIS TO GUIDE PRIMARY HEALTH CARE REDESIGN AND TRANSFORMATION use. Studies using electronic health records tend to analyse clinical pathways. PPA will often require new data collection and respective resources to undertake field work; • patient pathways are a useful and relevant measure to track PHC transformation activities. High levels of mobile phone ownership and patients’ willingness to share their experiences facilitate hybrid approaches of field and phone-based data collection. Care-seeking journeys can reveal system-level changes in healthcare environments. viii Introduction Introduction Patient pathways capture the way patients navigate parts of the healthcare landscape. Patient flow – ensuring patients move smoothly through the health system to obtain the care they need – is a key challenge in healthcare and a principal aim of health system redesign efforts. In 2018, the Lancet Global Health Commission on High Quality Health Systems proposed a fundamental shift from small scale quality improvement interventions to more systems-based solutions1. This has special relevance in low and middle-income countries where there are often coordination and regulation issues with care providers, unique healthcare-seeking patterns and provider preferences linked to weak public sector provision, traditional healthcare practices, and cost avoidance by patients. By observing, analysing and understanding patient pathways, it becomes possible to increase access and quality of care, reduce inefficiencies and costs, and personalise patient experience. How patients flow through a health system is a direct result of service demand, supply and healthcare choices people make when navigating these complex systems. Recognising that the patient’s care-seeking journey is determined by multiple factors and understanding these better can help inform the redesign of healthcare systems. Understanding the patient pathway can produce better results across the service delivery continuum, identify ways of reducing delays and pinpoint opportunities to protect patients from excessive healthcare costs. To meet the demand for quality, people-centred, integrated healthcare in the 21st century, PHC systems need to fundamentally change how they are designed, financed, and delivered. The pandemic has shown policy makers and ordinary citizens why health systems matter and what happens when they fail. By doing so, it has also created a once-in-a-generation chance to reform health systems.2 PHC is uniquely placed to help health systems address the megatrends of population growth in lower-income countries, population ageing and the rise of non-communicable diseases (NCDs). Therefore, traditional PHC systems must evolve to take full advantage of existing strengths and build new ones. Through lending, knowledge and convening, the World Bank supports countries in delivering the promise of reimagined PHC. With PHC redesign goals, three health system studies, including patient pathway analyses, have recently been carried out in Bangladesh, Ghana and India. The World Bank team learnt about different ways to track people through health systems, developed a methodology blueprint based on the literature review as well as previous analytical work, and implemented these studies with in-country research partners. This brief summarizes the patient pathway analysis (PPA) work. 1   Development of the PPA Methodology Development of the PPA Methodology LITERATURE REVIEW A literature review explored how patient pathways have previously been researched, as well as the aims, data needs, analytical methods and types of results of those individual studies. Open-source engines, such as Google and PubMed, were used along with folow up of citation lists to enrich output. The following results were obtained with specific search terms (including MeSH): • Patient AND pathways: 212,348 • Clinical AND patient AND pathways: 97,735 • “Patient pathway”: 492 • “Pathway modelling”: 28 • “Patient pathway analysis”: 15 • “Care pathway analysis”: 7 • “Critical pathway analysis”: 7 Three published reviews were used to learn about available studies and ways to categorize them: • Elbattah et al. (2015): The review looked at 22 papers and proposed a theoretical categorisation based on data usage within the models3 • Erdogan et al. (2018): The review aimed to classify 163 papers on process mining in healthcare, research type, application context, healthcare specialty, and other aspects4 • Aspland et al. (2019): Holistic review identifying and assessing 175 papers and 27 reviews.5 According to this review, papers can be classified along different topics including: Medical context: (I) – Condition area such as acute, chronic, surgical; – Care level (primary, secondary, tertiary, home care, disease); and – Scope (clinical, disease, department, hospital). Technical context: (II) – Method such as stochastic modelling, data mining or machine learning, simulation, optimisation and heuristics; – Investigating area such as mapped, modelled, improved; and – Outcome such as legal, patient progression, cost, resource, time. Planning decision (III) – Strategic, tactical, operational. 3   PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION Publications were screened for methodology and outputs, and several studies were highly relevant to the development of our system-level PPA approach. The review prioritized studies that addressed the system level rather than the facility level; tracked a patient journey rather than a clinical pathway in a specific care situation; and were based on quantitative analyses over traditional health-seeking behavioural studies using qualitative methods. Relevant papers covering associated topic areas, such as “continuity of care” or “healthcare systems design” were also reviewed. Figure 1 gives an overview of types of questions a PPA study can answer. FIGURE 1. SUMMARy OF QUESTIONS A PPA CAN ADDRESS How do patient journeys look along the care pathway? What needs to happen to align demand and supply better? What makes patients navigate to providers what makes them bypass? How well does the health provision market work for people? What interventions would Where does care attrition happen? improve patient experiences and What causes it and how can they be care journeys? prevented? What costs are incurred along the patient pathway? What are the cost drivers and can Where do delays PHC re-design reduce costs? along the care pathway occur? Where could digital Which factors make tools be placed to patients seek care strengthen good care late, or not at all? seeking? The literature review yielded five studies that had descriptions of methodologies considered most suitable for capturing how people navigate parts of the health system (Table 1). Three of them were on patient pathways for tuberculosis (TB) care, one was on type-2 diabetes and one on antenatal care. The longer list of studies with PPA importance and a greater diversity of health conditions addressed is shown in Annex 1. 4 Development of the PPA Methodology TABLE 1. SHORT-LIST OF RELEVANT PATIENT PATHWAy STUDIES Study Methodology / Take-aways Lu Zhang (2021): Title - "Patient pathway analysis of • PPA with focus on delayed diagnosis tuberculosis diagnostic delay: A multicentre retrospective • Right care level crucial for initial work-up cohort study in China"6 • Diagnostics equipment often missing Jesmin Pervin (2021): Title - "Developing targeted • Awareness intervention along pathway client communication messages to pregnant women • Topic: Antenatal care in Bangladesh: A qualitative study"7 • Prospective/efficacy data outstanding Chien-Chou Chen (2019): Title - "Patient and healthcare • PPA complemented with delay system characteristics are associated with delayed estimates treatment of tuberculosis in Taiwan"8 • Large-scale analysis • Pointing out of system inefficiencies Zhaohui Du (2019): Title - "Clinical pathway for the • Intervention study (digitalisation) community-level management of patients with type-2 • Electronically-optimised T2DM pathway diabetes"9 • KPIs in intervention group were better Christy L. Hanson (2017): Title - "Finding the Missing • Well-structured approach to PPA Patients with Tuberculosis: Lessons Learned from • Developed by WHO and B&MGF Patient-Pathway Analyses in 5 Countries"10 • Patient-centered TB care in LMICs TOUCHPOINT FRAMEWORK Several of the reviewed studies considered a pathway to be a chronological order of health system contacts patients have during their care-seeking journey (e.g. Devi et  al. 202011, Hanson et  al.201712, Bharatan et  al. 202113). This concept of ‘touchpoints’ with the care system to build a mapping framework (Figure 2) and a broad methodology for the PPA studies was used, strongly influenced by the TB pathway methodology14 and country case studies (Kenya, Ethiopia, Indonesia, Philippines, and Pakistan)15 by the Gates Foundation, as well as our work on care cascade methodology.16 The PPA methodology we developed was centred around pathway interviews with carefully selected respondents who were asked to recall their care journey based on the concept of ‘touchpoints’. The respondents were sampled in a way that minimised selection bias. Although resource-intensive, this meant community-based enrolment was preferable to facility-based enrolment, and if the latter was used, care was taken to enrol across a mix of facility types. Prototype questionnaires for two target groups of special interest were developed: maternal and neonatal healthcare (MNH) clients, and NCD clients. The questionnaire recorded key visits at specific healthcare facilities with details on facility location and type, timing of visit, and reason for facility choice. There was an attempt to get the actual name of the facility or provider and the characteristics (tier, sector) if the respondent was able to recall details. Because recall generally decreases over time, specific time intervals for some interview questions were applied. Using experiences from previous analytical work on implementation cascades, we defined major healthcare contacts for the two groups as follows, with some variation in individual studies (Table 2): 5 PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION FIGURE 2. FRAMEWORK FOR THE MAPPING OF PATIENT PATHWAYS Public By health system sector Private formal Private informal Level 1 By health care level Level 2 Level 3 Initial contact PPA Framework Diagnosis By care stage Medication Monitoring Maternal By condition/disease NCD Preventative/routine By type of contact Illness Acute emergency TABLE 2. TOUCHPOINTS OF CARE WITH THE HEALTH SYSTEM USED FOR PPA Touchpoint MNH clients NCD clients 1 First pregnancy care contact First care contact for the NCD 1R • Referral 2 Regular antenatal care Diagnosis 2R • Pregnancy complications visits 3 Onset of labour Treatment initiation 4 Delivery Treatment maintenance in last 3 months (drug refill) 4R • Referral 5 Postnatal care Treatment monitoring in last 12 months 5R • Newborn complications visits • Disease complications visits 6 Overview of the Three PPA Studies Overview of the Three PPA Studies Three health system assessments were conducted between 2021–2024 with the aim of assessing patient pathways, care-seeking behaviours and experiences, care quality, service delivery challenges and opportunities for improvements through redesigning the health system (Table 3). All three studies were conducted to inform World Bank health sector Program for Results financing. TABLE 3. OVERVIEW OF THE HEALTH SySTEM ASSESSMENTS WITH PPAs Urban Bangladesh Ghana districts Gujarat State (India) Study Bangladesh is strengthening Ghana’s Network of The State is redesigning its context public sector service Practice (NoP) initiative PHC system to improve provision in cities for NCDs, intends to scale up outcomes for maternal, environmental health and nationally as a key adolescent and child health other priority issues strategy for universal and NCDs health coverage Associated Urban Health, Nutrition, PHC Investment Program, Systems Reform Endeavours World Bank and Population Project supporting implementation for Transformed Health project supporting the delivery of the 2022–2025 Health Achievement in Gujarat of comprehensive PHC Sector Medium Term Project (SRESTHA-G) services for selected urban Development Plan and the areas UHC Roadmap Purpose To understand how urban To assess the effect To inform the design of slum populations in Dhaka of NoPs on patient health system intervention and Chattogram access and pathways and providers, pilots as part of the use essential health and learn about network SRESTHA-G Program for services to inform the configurations, as part of Results design and implementation government research on of Urban HNP Project early NoP implementation Research • How do low-income MNH • How do maternal and • How do individuals in questions and NCD patients navigate hypertension care need of care navigate the (ital: PPA) the health systems of pathways look like? care system? Dhaka and Chattogram? • How do networks • What is the quality of • What are the care- operate? essential healthcare in the seeking behaviours and • What do findings mean targeted geographic areas experiences of these for the NoP roll-out and of Gujarat? patients? human-centred service • What are the significant • Are there opportunities design? gaps, constraints and for reorganising care • What are concrete contextual factors that and promising service actions for improving hinder improvement? delivery models to address service access, quality • How does the community bottlenecks in accessing and effectiveness engage in healthcare quality PHC? through NoPs? decision-making? 7   BANGLADESH: FIRST APPLICATION OF THE PPA METHOD Bangladesh: First Application of the PPA Method The first application of the PPA was in two Bangladesh cities (Dhaka and Chattogram) characterized by a pluralistic urban healthcare environment. In these densely populated areas, there is a diversity of healthcare facilities with specialist maternal and child care, diabetes care, diagnostics, etc. as well as different pricing levels, all of which shape care-seeking and patient journeys. Figure 3 shows the NCDs included in the study (left side) and the provider taxonomy in the questionnaire, which was adapted from the PPA approach described by the Gates Foundation for TB care.17 Due to their novelty and complexity, the MNH and NCD questionnaires were thoroughly pre- tested, and field staff were trained on how to identify eligible respondents and conduct pathway interviews. FIGURE 3. BANGLADESH: USING THE TOUCHPOINT FRAMEWORK FOR NCDS Application of framework in Bangladesh: How do the urban poor with chronic illness navigate the local healthcare system? Initial care Initial Additional Treatment Medicine Monitoring seeking diagnosis diagnostics start refill L3-Public L3-Public L3-Public L3-Public L3-Public L3-Public sector sector sector sector sector sector CVD [N=1995] hypertension/ L2-Public L2-Public L2-Public L2-Public L2-Public L2-Public stroke/heart sector sector sector sector sector sector disease L1-Public L1-Public L1-Public L1-Public L1-Public L1-Public sector sector sector sector sector sector Diabetes L0-Public L0-Public L0-Public L0-Public L0-Public L0-Public [N=924] sector sector sector sector sector sector L3-Private L3-Private L3-Private L3-Private L3-Private L3-Private Chronic formal sector formal sector formal sector formal sector formal sector formal sector respiratory L2-Private L2-Private L2-Private L2-Private L2-Private L2-Private disease [N=882] formal sector formal sector formal sector formal sector formal sector formal sector COPD/asthma exclude TB L1-Private L1-Private L1-Private L1-Private L1-Private L1-Private formal sector formal sector formal sector formal sector formal sector formal sector L0-Private L0-Private L0-Private L0-Private L0-Private L0-Private informal informal informal informal informal informal Digital* = Documentation of all digital and mobile tools used when navigating health market, including phone Self/Digital* Self/Digital* Self/Digital* Self/Digital* Self/Digital* Self/Digital* 9   PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION In this PPA, the local health facilities that respondents remembered using were also surveyed and characterised, and their data was matched for triangulation. This enabled the team to carry out geospatial mapping of the facilities used (the academic partner, icddr,b, had previously created a geo- referenced health facility database for several cities and a user-friendly tool called the ‘Urban Health Atlas’,18 which could be leveraged). The study design included three urban slum areas, typical sites the Urban HNP Project was planning to cover in Dhaka and Chattogram. The study used diverse methods to capture the healthcare demand and supply situation in the study sites: pathway interviews, profiling and mapping of healthcare providers, focus group discussions (FGDs) and in-depth interviews (IDIs) with community members to contextualise the care pathways, key informant interviews (KIIs) with public and private healthcare providers, medical associations, policy makers and local NGOs, a discrete choice experiment on preferred facility attributes, and an extensive literature review on care-seeking by slum dwellers. MATERNAL CARE PATHWAYS IN URBAN BANGLADESH The maternal care pathway demonstrated strong preferences for facilities run by non-governmental organisations (NGOs), especially for pregnancy care, and the small role public sector facilities played in maternal care for urban, low-income respondents. Figure 4 shows the journeys of respondents who had already delivered and used providers for maternal care. FIGURE 4. URBAN BANGLADESH: MATERNAL CARE PATHWAYS Initial Regular Pregnancy Postnatal Contact Check-up Childbirth Care Public Community/ Primary (GP) GP 19 GP 20 GP 18 GP 19 Public Hospital (GH) GH 29 GH 32 GH 93 GH 94 Private Chamber (PC) PC 41 PC 30 PC 9 Private Hospital (PH) PH 212 PH 249 PH 415 PH 412 NGO (NG) NG 629 NG 305 NG 301 NG 623 Traditional Healer (TH) TH 2 Drug Store/ Pharmacy (DS) DS 68 DS 25 Other (OT) OT 4 OT 9 OT 5 OT 1 Source: Bangladesh PPA reporting. 10 BANGLADESH: FIRST APPLICATION OF THE PPA METHOD Overall, 63% of respondents sought initial care at NGOs, 21% at private hospitals, and 7% at drug stores (for pregnancy testing etc.). Respondents usually continued their regular ANC check-ups with the same provider. Respondents initiating pregnancy care at drug stores tended to switch to NGO- provided ANC. Among women who sought ANC care from an NGO and who delivered with a care provider, 35% and 11% delivered in private and public hospitals, respectively. PNC was mostly received from the same provider where women delivered. Even though a provider was used for pregnancy care, 16% delivered at home. More than one-third (35%) of the 1,532 survey respondents who had a live birth in the past two years reported not using any maternal care provider throughout their pregnancy or delivery. HYPERTENSION CARE PATHWAYS IN URBAN BANGLADESH Pharmacies and drug stores were the dominant care providers, with private hospitals contributing significantly to diagnosis and treatment initiation of new hypertension cases (Figure 5). Over one- third (36%) of respondents went to pharmacies/drug stores as their entry point to care (36%), followed by private hospitals (29%). Similarly, a third of hypertension (HTN) patients received an initial diagnosis of HTN at pharmacies, followed by 31% at private hospitals, and 20% at public hospitals. Treatment initiation, often linked to diagnosis, also occurred in a similar pattern by provider type. Almost two-thirds of respondents reported visiting pharmacies for blood pressure monitoring and ongoing maintenance (medication refills), regardless FIGURE 5. URBAN BANGLADESH: HYPERTENSION CARE PATHWAYS Treatment Regular Initial Contact Diagnosis Initiation Checkup Public Community/ Primary (GP) GP 11 GP 12 GP 13 Public Hospital (GH) GH 377 GH 404 GH 416 GH 61 Private Chamber (PC) PC 268 PC 256 PC 260 PC 24 Private Hospital (PH) PH 578 PH 617 PH 608 PH 166 NGO (NG) NG 40 NG 41 NG 38 NG 40 Traditional Healer (TH) TH 8 TH 5 TH 4 TH 3 Drug Store/ DS 724 DS 669 DS 663 Pharmacy (DS) DS 1263 Other (OT) OT 12 OT 14 OT 12 OT 28 Source: Bangladesh PPA reporting. 11 PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION of entry point. A few respondents changed care providers multiple times in search of effective care, and 22% were not using any care provider to manage their HTN. Reasons for choosing a care provider were perceived quality of care followed by proximity to home and recommendation by others. DIABETES CARE PATHWAYS IN URBAN BANGLADESH Private hospitals were the key providers of diagnosis and treatment initiation for new diabetes cases, but for disease management most patients tended to switch to pharmacies and drug stores (Figure 6). Private hospitals were the most common point of entry to care (51%), followed by pharmacies/drug stores (23%). More than half (58%) of respondents with diabetes were initially diagnosed in a private hospital, 17% were diagnosed in pharmacies/drug stores, and 11% were diagnosed in public hospitals. Treatment initiation occurred in a similar pattern. This reflects the situation of diabetes care in Bangladesh’s cities, with most diabetes patients accessing care at private facilities, including those from the Diabetic Association of Bangladesh and in Dhaka the BIRDEM General Hospital. Almost two-thirds used pharmacies/drug stores for accessing medication and monitoring tests. However, nearly one in five respondents used private health facilities for current disease management, which may be linked to complex care needs, insulin requirements or multi-morbidity requiring specialised care. Only 9% of respondents did not use any provider for current disease management. The respondents chose their care provider primarily based on perceived quality of care and advice from others. FIGURE 6. URBAN BANGLADESH: DIABETES CARE PATHWAYS Treatment Regular Initial Contact Diagnosis Initiation Checkup Public Community/ Primary (GP) GP 1 GP 1 GP 1 GP 1 Public Hospital (GH) GH 103 GH 102 GH 10 GH 98 Private Chamber (PC) PC 16 PC 92 PC 91 PC 90 PH 165 Private Hospital (PH) PH 480 PH 545 PH 575 NG 23 NG 33 NGO (NG) NG 28 NG 21 TH 2 TH 2 Traditional Healer (TH) TH 1 TH 1 Drug Store/ DS 578 DS 214 DS 162 DS 148 Pharmacy (DS) Other (OT) OT 15 OT 10 OT 6 OT 64 Source: Bangladesh PPA reporting. 12 iloting CHRONIC RESPIRATORY ILLNESS CARE PATHWAYS IN URBAN BANGLADESH Many respondents with chronic respiratory illnesses sought care at public hospitals, but regardless of entry point, retention in care was extremely low (Figure 7). The most common initial points of entry to care were public hospitals (28%), pharmacies/drug vendors (27%) and private hospitals (25%). Almost a third of respondents were initially diagnosed in public hospitals, reflecting the higher popularity of public hospitals compared to HTN and diabetes cases. Despite treatment initiation, only a fourth of respondents were still in care for their asthma, chronic cough or chronic obstructive pulmonary disease (COPD). The discontinuation of a care pathway could have been due to their condition improving in the absence of causes, such as the cold, indoor or outdoor air pollution, dust or allergens. Reasons for choosing a care provider were again perceived quality of care, proximity to home, recommendations from others, as well as lower-costs. FIGURE 7. URBAN BANGLADESH: CHRONIC RESPIRATORY ILLNESS CARE PATHWAYS Treatment Regular Initial Contact Diagnosis Initiation Checkup Public Community/ Primary (GP) GP 8 GP 9 GP 9 GP 1 GH 48 Public Hospital (GH) GH 249 GH 278 GH 281 PC 15 Private Chamber (PC) PC 121 PC 115 PC 118 PH 89 Private Hospital (PH) PH 224 PH 257 PH 249 NG 20 NGO (NG) NG 41 NG 37 NG 35 Traditional Healer (TH) TH 4 TH 4 TH 4 TH 1 Drug Store/ DS 57 Pharmacy (DS) DS 243 DS 190 DS 194 Other (OT) OT 4 OT 4 OT 4 OT 15 Source: Bangladesh PPA reporting. 13 Ghana: PPA as Part of a Network of Practice Evaluation Ghana: PPA as Part of a Network of Practice Evaluation The study design had a comparative component (two matched district pairs) and a formative component (two urban districts) to inform NoP strategy and roll-out (a Network of Practice is a hub-and-spoke care model based around health centres, a scalable, efficient design with satellite care sites added as needed). This was a mixed methods study with secondary data from routine systems, integrated with primary data collected in the six districts from June 2023 to March 2024. Quantitative data was collected via pathway interviews and patient shadowing, qualitative data came from focus group discussions and key informant interviews with care providers and managers. Half the pathway respondent sample included women aged ≥18 years who were either pregnant or had had a baby within 12 months of the interview (MNH pathway), the other half included adults with a diagnosis of hypertension (HTN pathway). Respondents with diverse care-seeking behaviours were enrolled at various locations: • 780 pathway interviews at facility exits at district hospitals (14% of sample), health centers (23%), clinics (21%), CHPS posts/compounds (32%), and pharmacies/drug sellers (9%). • 351 pathway interviews at the community level in markets (32%), bus stops (35%), lorry parks (11%), among traditional healers/practitioners (8%), parks (6%) and restaurants etc. (7%). The shadowing of 156 MNH and HTN clients provided insight into how clients navigated a health facility, how services were delivered to them and how they were perceived. MATERNAL CARE PATHWAYS IN GHANA The maternal care pathway showed a clear preference for hospital services, including district, regional, and some private hospitals for initial ANC and subsequent maternity care (Figure 8). This preference was greatest for childbirth, with 52% of respondents choosing hospitals for delivery primarily due to personal choice rather than referral. Despite the accessibility of health centres and health posts, their use decreased as pregnancies progressed. For PNC, some women opted for health centres instead of hospitals. The data suggested minimal switching between different types of health facilities throughout the maternity care continuum, with a trend towards continuity of care at the initial facility or a shift to higher-tiered facilities, with very few home deliveries. Though the MNH care pathways showed a preference for hospitals, ‘closeness to home’ followed by ‘quality of care’ received at the health facility’ were the most cited factors informing the respondents’ choice of health facility selection across all touchpoints. In the NoP district Hohoe (where health centres had been strengthened as part of the NoP initiative), 55% of pregnant respondents said they preferred health centres, 21% would prefer a district hospital or other hospitals, and none would opt for maternity homes for labour and delivery. In the second NoP district, Dormaa Central, 39% of pregnant respondents would want to attend health centres, 19% would prefer district hospitals or other hospitals, 27% would go to health posts, and only 1% would opt for maternity homes for labour and delivery. 15   PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION FIGURE 8. GHANA: MATERNAL CARE PATHWAYS Care at Onset First ANC Regular ANCs of Labour Delivery Regular PNC Hospital (H) H 54 H 44 H 65 H 71 H 56 Health Centre (HC) HC 39 HC 34 HC 30 HC 27 HC 37 Clinic (CI) CI 18 CI 18 CI 23 CI 25 CI 12 Health Post (HP) HP 15 HP 12 HP 12 HP 9 HP 14 Maternity Home (MH) MH 2 MH 1 MH 1 MH 1 MH 1 Traditional (TH) TH 1 31 5 Unassisted Don’t Know delivery at home 4 Did not visit a health 2 1 No PNC provider (NP) NP 1 No regular NP 10 Delivered on the way ANCs to the facility 4 Assisted delivery at home Source: Ghana PPA reporting. HYPERTENSION CARE PATHWAYS IN GHANA The hypertension care pathway also mainly involved hospital-based care, especially for treatment initiation (Figure 9). Initial detection of HTN frequently occurred during unrelated hospital visits via opportunistic screening. This indicates that hospitals, including district, regional, and some private ones, actively implement screening. Disease monitoring services are more accessible and cost less at lower-level health facilities which do not require health insurance payments. Despite the availability of monitoring services at these lower-tier facilities, hospitals remained a preferred option for many. HTN clients also showed a tendency to continue their care at the facility where it began, with minimal down-referral to smaller facilities. The quality of care received at the health facility, previous positive experiences and a closeness to home were cited as the most common factors informing respondents’ health facility selection across all HTN touchpoints. 16 Ghana: PPA as Part of a Network of Practice Evaluation FIGURE 9. GHANA: HYPERTENSION CARE PATHWAYS Treatment Treatment Monitoring First contact Diagnosis initiation maintenance facility type Hospital (H) H 219 H 228 H 232 H 210 H 165 Health Centre (HC) HC 88 HC 88 HC 89 HC 92 HC 116 Clinic (CI) CI 63 C 65 CI 67 CI 56 CI 64 Health Post (HP) HP 34 HP 19 HP 8 HP 46 HP 30 Maternity Home (MH) MH 6 MH 3 MH 3 MH 3 MH 6 Pharmacy (Ph) Ph 5 Ph 3 Ph 4 Ph 40 Ph 11 Home based non-physician health NHW 4 NHW 1 NHW 1 NHW 2 worker (NHW) Traditional (TH) TH 1 TH 1 TH 3 TH 2 TH 2 Community Health Worker (CHW) CHW 1 1 2 9 7 No diagnosis No initiation No maintenance No of treatment of treatment monitoring Source: Ghana PPA reporting. The PPA was used to evaluate the effect of NoPs on pathways. Although hospitals were the preferred provider in NoP districts, health centres were more commonly used than in their paired non-NoP districts acrossmost MNH and HTN touchpoints (Figure 10). Minor exceptions noted for delivery in Hohoe and HTN treatment initiation in Dormaa Central were ascribed to referrals and hospital preference. While this increased use of health centres cannot directly be linked to NoP implementation, when considered alongside other quantitative and qualitative findings, this indicates the positive impact of the NoP intervention on the decentralization of care. 17 PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION FIGURE 10. GHANA: EVALUATING THE NoP EFFECT ON HEALTH CENTRE USE THROUGH PPA Maternal care pathway: District 1st ANC visit Regular ANC Onset of labour Delivery PNC Dormaa Central (NoP) 31% 39% 35% 35% 30% Bono +4 %age +11 %age +15 %age +13 %age +15 %age pair points points points points points Tain 27% 28% 20% 22% 25% Hohoe 48% 55% 33% 22% 33% (NoP) Volta +19 %age +11 %age +5 %age –6 %age +1 %age pair points points points points points Ketu North 29% 44% 28% 28% 32% Hypertension care pathway: Treatment Treatment Treatment District 1st Contact Diagnosis initiation maintenance monitoring Dormaa Central (NoP) 27% 27% 24% 25% 30% Bono +6 %age +6 %age –1 %age +1 %age +5 %age pair points points points points points Tain 21% 21% 16% 24% 25% Hohoe 22% 20% 18% 24% 40% (NoP) Volta +9 %age +6 %age +5 %age +11 %age +20 %age pair points points points points points Ketu North 13% 14% 13% 13% 19% Source: Ghana PPA reporting. 18 Gujarat, India: PPA as Part of a System Assessment and Informing Service Delivery Redesign Pilots Gujarat, India: PPA to inform Service Delivery Redesign Pilots As part of a broader effort to inform the design and strengthening of comprehensive primary health care (CPHC) in Gujarat, a patient pathway analysis was conducted to understand how individuals navigate the health system and the barriers they face in accessing quality care. The study focused on four diverse districts—Banaskantha, Dahod, Rajkot, and Vadodara—selected for their geographic and population heterogeneity. Pathway interviews were carried out with 1,102 pregnant or recently delivered women and 1,110 individuals with diagnosed hypertension, cardiovascular disease, or diabetes, identified through a household screening of 22,679 households. The interviews mapped care-seeking journeys, highlighting delays, detours, and points of dropout. To complement this, 700 exit interviews were conducted with patients at public and private facilities to assess their experiences, perceptions of care quality, and system responsiveness. Together, the analyses generated critical insights for improving CPHC service design and delivery in Gujarat.. MATERNAL CARE PATHWAYS IN GUJARAT Private hospitals were the preferred maternal care provider, especially for the first ANC contact and for delivery with lower-level facilities playing a greater role for regular ANC. Almost all respondents had used at least one care provider during their maternal journey – 98.9% had ANC1 and 74.7% had ANC4+ (ranging from ANC4+ of 62.4% in Banaskantha District, to 97.0% in Rajkot District). Private hospitals were chosen by 43% of women for their first ANC (retaining 78.3% of them for delivery). For childbirth services, most women preferred private hospitals and higher-level public facilities with a notable preference for specialist care, diagnostic service availability and perceived quality of care. Despite financial constraints, most pathways involved private hospitals, highlighting the significance of local community norms and the perception of social status associated with seeking care at private hospitals. PNC was also near-universal, with 97% of respondents having had at least one PNC contact, and PNC was almost always received at the birthing facility. Among the 30 respondents who delivered at home, 15 had at least one PNC contact. NCD CARE PATHWAYS IN GUJARAT With regards to diabetes and hypertension/CVD care, most care pathways centred around private hospitals and clinics, even in emergencies and even if these facilities were most distant and required additional travel (Figure 12). The care pathways were similar for HTN/CVD and diabetes, and started for 71% of respondents during a health facility visit motivated by feeling unwell, for 16% due to opportunistic screening, and for 12% during an emergency. Respondents cited challenges with seeking care at private hospitals, such as higher costs and longer travel distances. However, private facilities were people’s go-to choice, and their desire for advanced healthcare facilities with specialist doctors and diagnostic services was evident. One study district, Dahod, stood out as having more pathways involving public providers, unlike the trend observed in other districts. For treatment maintenance, 48% of NCD patients used private hospitals or clinics and 27% had discontinued care altogether. Public health facilities, particularly PHCs, besides being underused for NCD care, faced concerns about consultation times and experienced longer delays in both diagnoses and starting treatment. 19   FIGURE 11. GUJARAT: MATERNAL CARE PATHWAYS Private hospital (with IPD) 318 Private hospital (with IPD) 293 Private hospital (with IPD) 364 2 Traditional healer 129 Community Platforms/FLW Community Platforms/FLW 106 missing 2 CHC FRU/Non-FRU 76 CHC FRU/Non-FRU 109 CHC FRU/Non-FRU 66 82 Home Home 30 PHC/U-PHC 85 Missed 58 PHC/U-PHC 58 57 PHC/U-PHC HWC/SC 38 PHC/U-PHC 70 Private clinic (only OPD) 17 Missed 9 Private clinic (only OPD) 44 HWC/SC 22 MC 52 MC 33 DH/SDH 51 Private clinic (only OPD) 36 40 DH/SDH DH/SDH 81 21 МС MC 33 DH/SDH 40 NGO/Charitable Hospital 13 NGO/Charitable Hospital 11 NGO/Charitable Hospital 14 Pregnancy determination First ANC Additional ANC Delivery Source: Gujarat technical report. FIGURE 12. GUJARAT: NCD CARE PATHWAYS CHC-FRU 118 CHC-FRU 89 CHC-FRU 119 CHC-FRU 120 Pvt. & Charitable Hospital 456 Pvt. & Charitable Hospital 283 Pvt. & Charitable Hospital 463 Pvt. & Charitable Hospital 457 None 307 None 2 Others 16 Others 13 Did not start treatment 7 Others 21 Others 35 PHC 109 PHC 146 PHC 132 HWC/SC 48 HWC/SC 42 DH/SDH 91 PHC 83 DH/SDH 79 DH/SDH 93 DH/SDH 56 Private Clinic (MBBS/AYUSH) 263 Private Clinic (MBBS/AYUSH) 248 Private Clinic (MBBS/AYUSH) 190 Private Clinic (MBBS/AYUSH) 260 MC 26 MC 23 MC 26 MC 19 Initial Contact Diagnosis Treatment initiation Treatment maintenance Source: Gujarat technical report. 20 Conclusions Conclusions The three PPA studies were conducted as part of health system research informing the design and implementation of ‘Program for Results’ projects with World Bank financing in Bangladesh cities, Ghana and Gujarat State. They all focused on the maternal and NCD care continua due to the importance of accessible and interlinked primary care services for these conditions. These care continua encompass preventative (ANC, NCD screening), diagnostic and treatment aspects, and, in some cases, acute and emergency care. Continuity of care is particularly important for maternal and cardiometabolic NCDs, as complications that arise must be followed and managed appropriately. These conditions are therefore well suited for pathway analysis which studies how people navigate a multi-tier health system. They can reveal a host of health system issues, such as bypassing the primary care level by patients and poor gatekeeping by facilities, access barriers to care, insufficient up- and down-referral, weak service decentralization, and others. The Ghana case study also illustrates PPA use for the evaluation of a system-level intervention, the Networks of Practice. The three applications have helped refine the PPA methodology and provided several insights and conclusions: 1. The PPA methodology enables collection of longitudinal data on service use and can therefore complement cross-sectional datasets. Most data sources on care for MNH and NCD conditions – such as the Demographic and Health Surveys, Multiple Indicators Cluster Surveys and STEPS Surveys – provide important data on health service use but lack detail on service continuity given their cross- sectional nature. Longitudinal data is relatively scarce, yet the information on continuity of care is critical for service delivery improvements and PHC redesign. Although our PPA methodology is not able to track all care-seeking across the maternal and NCD continuum, it records critical care contacts. Recall data on referrals were collected and analysed, with results shown in the individual country reports (for urban Bangladesh, the MNH and NCD referrals were also spatially mapped). 2. Identification of respondents in the right locations is crucial for the validity of pathway results. We relied mostlyon respondent enrolment at the household/community level; at the facility level we focused on a mix of facility types. For the PPAs enrolling respondents at the household level (Bangladesh, Gujarat), there was a necessary screening to identify eligible respondents. We applied carefully developed eligibility criteria across households in the sampling frame. In Bangladesh, a total of 17,923 households needed to be screened for eligible participants across 10 slum areas to interview a total of 5,829 MNH and NCD pathway respondents (number needed to screen = 4–5 households). In Gujarat, 22,679 households were screened across the study areas in four districts to deliver 2,212 pathway interviews. 3. Clear inclusion and exclusion criteria provide well-defined study populations for assessing their flow through parts of the health system. For MNH, we generally included pregnant women and women who had given birth in the past 12 or 24  months, but excluded respondents who had experienced stillbirths, miscarriages, pregnancy terminations, or neonatal deaths. For NCDs, individuals were eligible based on having been diagnosed with or receiving treatment for the NCDs of interest, or having a documented history of strokes, heart attacks or other heart diseases. For the chronic respiratory illness cases in Bangladesh, people needed a diagnosis of COPD, asthma, chronic cough or breathlessness since at least two years, and individuals with a diagnosis of tuberculosis were excluded. 21   PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION 4. A balance needs to be struck between recall capacity and data collected from individual participants. The pathway interviews collect retrospective data and the studies demonstrated that respondents can recall their care journey with some level of detail. It makes sense that major health care events, such as ANC, care at onset of labour, child delivery and NCD diagnosis are well remembered by people. To maximize both the number of responses and their quality, we found it useful not to apply a recall window for basic touchpoint questions of who and where the care provider was, or whether there was any up-referral. In contrast, we did use a 1–2 year recall window for additional pathway questions, such as reasons for provider choice, barriers experienced, delays, medications and diagnostics prescribed at a touchpoint, as well as costs incurred. Respondents always had an answer option of “don’t know.” 5. The start of the care pathway needs to be defined in each case, using health cards and appropriate questions. While in some contexts (e.g. Ghana) the maternal pathway interview could easily ascertain whether the first pregnancy contact represented ANC1, this was less clear elsewhere. By using mother and child health cards and questioning, the Bangladesh and Gujarat PPAs determined whether a provider visit represented ANC1 (e.g. Were you provided basic checks like blood test, BP measurement, weight m easurement, urine tested, abdomen check? Were you provided iron and folic acid tablets? Were you provided counselling for pregnancy and related risks? ). The start of the NCD pathway was generally easier to determine, and the focus was on the circumstances of first contact (such as part of an emergency visit, a routine vital signs check, community-based screening, etc.), which gives some insight into NCD case-finding strategies in the study locations. 6. The pathway interview can collect a rich set of data on diverse aspects of care seeking: • Health indicator data on the specific study population (e.g. slum dwellers) such as ANC1 and ANC4+ coverage, institutional and assisted delivery, and C-section; • Characteristics of respondents with specific outcomes, such as home delivery, referral, care-seeking delays, non-retention in care; • Data on travel mode and travel time to reach care, which can be used for geospatial mapping, to access metrics or carbon footprint estimation; • Data on provider preferences and barriers, as well as direct and indirect expenditure data for accessing care; • Data on most popular providers including pharmacies, which can help prioritise capacity strengthening and partnership building activities; • Data on possible solutions as proposed by the respondents themselves, based on their care experiences. 7. The literature review on PPA methods showed there are diverse approaches to tracing patient journeys and that research objectives and data availability determine the choice of PPA methodology. Some studies have been using routine data drawing on individual-level electronic health records, although these studies are mostly focused on narrower assessments of clinical pathways. Otherwise, PPA does require new data collection and respective resources to undertake field work. In our case, we opted for retrospective pathways through recall by study respondents who are MNH and NCD clients. Prospective data collection on care journeys is also being implemented. The MNH e-Cohorts in Ethiopia, India, Kenya and South Africa offer a great example of an innovative PPA methodology collecting prospective data on user experience, processes of care, outcomes and health system quality.19 Women are enrolled at ANC1 and followed during pregnancy and postpartum until three months after delivery. The methodology combines in-person surveys at ANC1 and at endline, and repeated phone surveys in between with 22 Conclusions trained data collectors administering an interview. Similar to our PPA methodology, it establishes a sequence of events and gives insight into care continuity and timeliness of care. 8. Patient pathways are a useful and relevant measure for tracking PHC transformation activities. However, any PPA research needs to carefully review the strengths and weaknesses of the available methodological approaches and understand the resource needs for implementation. Given the high prevalence of mobile phone ownership and the willingness of most health system users to share their experiences, hybrid approaches using in-person and phone-based interviews, combined with any available routine service data, hold great promise for gaining a greater understanding of care-seeking journeys in changing health systems. 23 Annex 1: Long-list of Studies Identified in the 2021 Literature Review (28) Annex 1: Long-list of Studies Identified in the 2021 Literature Review (28) Date 2021 First author Tanaya Bharatan Title A Methodology for Mapping the Patient Journey for Noncommunicable Diseases in Low- and Middle-Income Countries Goal/Use To build knowledge, amass data and improve patient pathways in LMICs Input PubMed / Literature search Methodology MAPS (Mapping the Patient Journey Towards Actionable Beyond the Pill Solutions) based on a 3-state evidence mapping Output Local knowledge on disease and pathways Level Clinical/disease Link/DOI https://www.dovepress.com/a-methodology-for-mapping-the-patient-journey-for- noncommunicable-dise-peer-reviewed-fulltext-article-JHL Date 2021 First author Haiyan Hu Title Health service underutilization and its associated factors for chronic diseases patients in poverty-stricken areas in China: a multilevel analysis Goal/Use Better understand healthcare use and behaviour in impoverished areas Input Face-to-face interview data from patients with chronic diseases Methodology Anderson behavioural model / logistic regression analysis Output Predictor variables for underuse of healthcare services Level Disease level Link/DOI https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-021-06725-5 25   PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION Date 2021 First author Bernardo Meza-Torre Title Health service organisation impact on lower extremity amputations in people with type-2 diabetes with foot ulcers: systematic review and meta-analysis Goal/Use Assess whether better organisation / patient care pathways can lead to a decrease in extremity amputations in people with DM type II Input Literature published between 1999 and 2019 Methodology Systematic review; Statistical analysis Output PPA as an efficient measure to reach outcomes Level Disease Link/DOI https://link.springer.com/article/10.1007/s00592-020-01662-x Date 2021 First author Jesmin Pervin Title Developing targeted client communication messages to pregnant women in Bangladesh: a qualitative study Goal/Use Develop targeted client communication to increase care use Input Data from in-depth interviews with study participants Methodology Qualitative study: in-depth interviews, Health-Belief Model (HBM) Output Taxonomy of behaviour change techniques + tailored messaging Level Pre-clinical/disease Link/DOI https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-021-10811-y Date 2021 First author Lu Zhang Title Patient pathway analysis of tuberculosis diagnostic delay: a multicentre retrospective cohort study in China Goal/Use Identify (long) delays in starting tuberculosis treatment Input Clinical data on initial diagnostics Methodology Multivariate logistics regression Output Risk factors for delays in tuberculosis treatment Level Clinical/hospital/disease Link/DOI https://pubmed.ncbi.nlm.nih.gov/33421578/ 26 Annex 1: Long-list of Studies Identified in the 2021 Literature Review (28) Date 2020 First author Ratna Devi Title A Narrative Review of the Patient Journey Through the Lens of Non-communicable Diseases in Low and Middle-Income Countries Goal/Use Develop a better understanding of patient pathways in LMICs Input PubMed / Literature review Methodology Theoretical framework for patient journey analysis Output Summary of key touch points during a patient journey Level Clinical Link/DOI https://pubmed.ncbi.nlm.nih.gov/33052560/ Date 2020 First author Minsu Cho NOT ASSESSED Title Developing data-driven clinical pathways using electronic health records: The cases of total laparoscopic hysterectomy and rotator cuff tears Goal/Use Build a data-driven clinical pathway for two surgical disease conditions Input Electronic health records Methodology Matching rate-based mining algorithms Output The data-driven clinical pathways outperformed the models by clinical experts. Level Clinical/hospital/disease Link/DOI https://pubmed.ncbi.nlm.nih.gov/31683142/ Date 2020 First author Anastasia A. Funkner Title Surrogate-assisted performance prediction for data-driven knowledge discovery algorithms: application to evolutionary modeling of clinical pathways Goal/Use Identification of typical care pathways within one single disease Input Electronic patient records Methodology Identification of surrogate models for prediction of the target algorithm’s quality and performance, applied for discovering clusters of interpretable clinical pathways in electronic health records of patients with acute coronary syndrome. Output Best surrogate model + typical clusters within care pathway Level Clinical/hospital/disease Link/DOI https://arxiv.org/abs/2004.01123 27 PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION Date 2020 First author Darma Imran Broad framework including cascade and barriers Title Establishing the cascade of care for patients with tuberculous meningitis Goal/Use Optimise services for tuberculous meningitis patients Input Not empirical Methodology Theoretical framework on cascade analysis Output Not empirical Level Healthcare system/disease Link/DOI https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7008603/ Date 2020 First author Chu-Chang Ku Title Patient pathways of tuberculosis care-seeking and treatment - an individual-level analysis of National Health Insurance data in Taiwan Goal/Use Highlight mismatch between care-seeking patterns and service coverage Input Patient-level routine data on healthcare use Methodology Patient pathway / gap analysis Output Detailed picture of care-seeking behaviour Level Clinical/hospital/disease Link/DOI https://gh.bmj.com/content/5/6/e002187 Date 2020 First author Robyn Margaret Stuart Title Diabetes Care Cascade in Ukraine: An Analysis of Breakpoints and Opportunities for Improved Diabetes Outcomes Goal/Use Estimate costs/identify measures to close gap in diabetes treatment Input Existing routine data and newly collected primary data Methodology Cascade analysis Output Micro-cost assessment and bottleneck identification Level Clinical/hospital/disease Link/DOI https://doi.org/10.1186/s12913-020-05261-y 28 Annex 1: Long-list of Studies Identified in the 2021 Literature Review (28) Date 2019 First author Chien-Chou Chen Title Patient and health care system characteristics are associated with delayed treatment of tuberculosis cases in Taiwan Goal/Use Gap analysis tuberculosis diagnostics & assessment of delayed treatment Input Treatment data for tuberculosis from registry Methodology Assessment of care-seeking pathways & Cox regression analysis Output Quantification of gap & estimate of delayed treatment start Level Clinical/hospital/disease Link/DOI https://doi.org/10.1186/s12913-019-4702-0 Date 2019 First author Zhaohui Du Title Clinical pathway for the community-level management of patients with type 2 diabetes Goal/Use Intervention with an electronic clinical pathway implemented. To assess the results of a type-2 diabetes electronic clinical pathway Input A literature review and expert meetings were used to formulate a community-based clinical pathway document for type-2 diabetes, and an electronic clinical pathway platform was developed Methodology This was an actual “electronic clinical pathway” intervention Output Post-intervention clinical parameters Level Clinical/hospital/disease Link/DOI https://doi.org/10.1002/hpm.2868 Date 2018 First author Mona Jabbour Title Defining barriers and enablers for clinical pathway implementation in complex clinical settings Goal/Use Improve patient outcomes and reduce healthcare costs Input Quantitative and qualitative data Methodology Theory-based pathway analysis Output Barriers and enablers to the implementation of care pathways Level Hospital Link/DOI 29 PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION Date 2018 First author Kelsey Flott Title Care pathway and organisational features driving patient experience: statistical analysis of large NHS datasets Goal/Use Optimisation of patient experience Input NHS organisational-level data Methodology Multicollinearity tests and multilinear regression Output The relationship of care pathway and organisational variables to organisation-level patient experience Level Healthcare system/hospital Link/DOI https://doi.org/10.1136/bmjopen-2017-020411 Date 2018 First author Susann Plate Title High experienced continuity in breast cancer care is associated with high health related quality of life Goal/Use To assess continuity-of-care and quality-of-care in oncological patient cohort Input Survey among breast cancer patients treated in two hospitals Methodology Qualitative study: standardised and validated questionnaires assessing continuity-of- care and quality-of-life Output Assessment of continuity-of-care and quality-of-life as well as an assessment of how they correlate Level Hospital-level/disease Link/DOI https://pubmed.ncbi.nlm.nih.gov/29458376/ Date 2018 First author Jonathan Roux Title Use of state sequence analysis for care pathway analysis: The example of multiple sclerosis Goal/Use Quality of care and to optimize the use of resources Input Patient data A five-cluster typology was obtained which allowed distinction of care consumption groups 30 Annex 1: Long-list of Studies Identified in the 2021 Literature Review (28) Methodology State sequence analysis (SSA) Output Costs Level Clinical/hospital/disease Link/DOI https://journals.sagepub.com/doi/10.1177/0962280218772068 Date 2017 First author Anastasia A. Funkner Title Data-driven modeling of clinical pathways using electronic health records Goal/Use Determine patient pathways within the hospital with real time data, determine optimal treatment options. Case study: Acute coronary syndrome Input Electronic patient records Methodology Modelling/visual depiction of clinical pathways Output Clinical pathways/clusters of clinical pathways for comparison Level Clinical/hospital/disease Link/DOI https://doi.org/10.1016/j.procs.2017.11.108 Date 2017 First author Celine Garfin Title Using Patient Pathway Analysis to Design Patient-centered Referral Networks for Diagnosis and Treatment of Tuberculosis: The Case of the Philippines Goal/Use Develop better understanding where tuberculosis patients seek care in order to tackle resistant organisms Input National-level treatment/incidence data Methodology Alignment/gap analysis between need and resources Output Opportunities for strengthening access Level System/disease Link/DOI https://academic.oup.com/jid/article/216/suppl_7/S740/4595556 Date 2017 First author Christy L. Hanson Title Conducting Patient-Pathway Analysis to Inform Programming of Tuberculosis Services: Methods 31 PATIENT PATHWAY ANALYSIS TO GUIDE PHC REDESIGN AND TRANSFORMATION Goal/Use Gap analysis – Need vs. availability of tuberculosis screening, diagnosis, and treatment at various levels of the health system Input National or regional level data (surveys), hospital counts Methodology Data analysis and visualisation of different pathway steps Output Gap analysis between resources available and resources needed Level Healthcare system/hospital Link/DOI https://pubmed.ncbi.nlm.nih.gov/29117350/ Date 2017 First author Christy L. Hanson Title Finding the Missing Patients with Tuberculosis: Lessons Learned From Patient-Pathway Analyses in 5 Countries Goal/Use Identify “missing patients” with tuberculosis Input Care-seeking behaviour and tuberculosis services/resources Methodology Gap analysis between resources available and resources needed Output Gap analysis between resources available and resources needed Level Cross-country/National/sub-national Link/DOI https://pubmed.ncbi.nlm.nih.gov/29117351/ Date 2017 First author Enos Masini Title Using Patient-Pathway Analysis to Inform a Differentiated Program Response to Tuberculosis: The Case of Kenya Goal/Use Identify gaps in diagnostics/treatment of tuberculosis in Kenya Input Data on care-seeking behaviour of newly diagnosed tuberculosis patients Methodology Gap analysis in the form of patient pathway analysis Output Areas of shortage in provision of tuberculosis measures Level National/subnational=county Link/DOI https://doi.org/10.1093/infdis/jix381 32 Annex 1: Long-list of Studies Identified in the 2021 Literature Review (28) Date 2017 First author Thomas Monks Title A framework to accelerate simulation studies of hyperacute stroke systems Goal/Use Improve hyperacute stroke systems Input Literature / available data Methodology Conceptual modelling framework Output Improved hyperactive stroke patient pathway Level Clinical/disease Link/DOI https://www.sciencedirect.com/science/article/pii/S2211692317300127 Date 2017 First author Asik Surya Title Quality Tuberculosis Care in Indonesia: Using Patient Pathway Analysis to Optimize Public–Private Collaboration Goal/Use Gap analysis – Need vs. availability of tuberculosis screening, diagnosis, and treatment at various levels of the health system in Indonesia Input Care-seeking patterns of patients Methodology Data analysis and visualization of different pathway steps Output Gap analysis between resources available and resources needed Level National/subnational level Link/DOI https://pubmed.ncbi.nlm.nih.gov/29117347/ Date 2016 First author Stephen McCarthy Title An Integrated Patient Journey Mapping Tool for Embedding Quality in Healthcare Service Reform Goal/Use Close the gap between service needs, improved performance and delivering a good patient experience Input Literature review Methodology Integrated tool for patient journey mapping Output Improved patient pathway Level Clinical Link/DOI https://www.tandfonline.com/doi/full/10.1080/12460125.2016.1187394 33 Date 2016 First author Yiye Zhang Title Data-Driven Clinical and Cost Pathways for Chronic Care Delivery Goal/Use Including cost data into clinical pathways for decision-making Input Electronic patient and cost data Methodology Clinical pathway learning / AI-algorithms / Pathway clustering Output Pathway clusters + cost information Level Clinical/hospital Link/DOI https://www.ajmc.com/view/data-driven-clinical-and-cost-pathways-for-chronic-care- delivery Date 2012 First author Xian Yang Title Modelling and performance analysis of clinical pathways using the stochastic process algebra PEPA Goal/Use Clinical pathway through a mathematical model Input Public clinical databases Methodology Stochastic model performance evaluation process algebra (PEPA) Output Performance analysis along clinical pathway Level Clinical/hospital/disease Link/DOI https://doi.org/10.1186/1471-2105-13-S14-S4 Date 2007 First author Haytham Elghazel Title Clinical pathway analysis using graph-based approach and Markov models Goal/Use Clustering of patients Input Electronic patient + cost data Methodology Markov chain models Output Models for possible paths for a new patient Level Clinical/hospital Link/DOI https://doi.org/10.1109/ICDIM.2007.4444236 Annex 2: Citations List Annex 2: Citations List Kruk ME, Gage AD, Arsenault C et al. 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