Plain Language Summary
In low- and middle-income countries, patients living with noncommunicable diseases face several challenges due to limited healthcare resources, access to accurate information, and prevailing social, economic, and cultural conditions. These factors influence care pathways, patient behavior, and consequently the patient journey. A patient journey is defined as the sequence of steps beginning with a patient’s awareness that something is not right or they are not feeling well and seeking interaction with hospital, healthcare professional, or other stakeholders in a healthcare system. Understanding these interactions can provide many insights into patient experience and the outcomes of their disease. In the context of patients suffering from noncommunicable diseases, these interactions can be broadly categorized as (1) awareness of disease and knowledge of associated risk factors; (2) screening and risk assessment; (3) diagnosis and treatment decision; (4) treatment experience and access to care; and (5) adherence to treatment for long-term management. The examination of these key patient journey touchpoints highlights opportunities in noncommunicable disease management and can help in prioritizing interventions for improving prevention and control. Strategies to improve the patient journey must integrate the patients’ perspective at each touchpoint. Digital health technologies and widespread use of mobile phones in low- and middle-income countries allow patients to actively participate in their care through home monitoring devices, healthcare apps, wearable technology, and telehealth services.
Introduction
Noncommunicable diseases (NCDs) are the leading cause of deaths globally, particularly in low- and middle-income countries (LMICs) [
1]. The NCD mortality burden is disproportionately higher in LMICs, with over 75% of global NCD-related deaths [
1]. Apart from the impact on health and well-being, NCDs also pose high financial burden on the national healthcare systems and often lead to catastrophic expenditure by households, particularly the poor who are the most affected [
2]. Research on the major NCDs, i.e., cardiovascular (CV) diseases, diabetes, cancer, chronic respiratory diseases, and mental health disorders, informs that these conditions are associated with modifiable risk factors (tobacco and excessive alcohol use, unhealthy diet, and physical inactivity) that are common to them, and contribute to the disease onset [
3]. Despite global commitment to reduce NCD-related premature mortality, progress is slow particularly in the LMICs [
4]. This highlights the need to recalibrate the existing NCD care model.
Patient Journey Mapping
Patient journey mapping—also called healthcare process mapping—is an exercise used by healthcare leaders for viewing the management of specific conditions from the patients’ perspective, as a series of consecutive events or activities between patients and healthcare systems that shape the patient experience [
5,
6]. From a hospital or healthcare system perspective, most patient journeys typically comprise six sequential stages as described in Table
1. Mapping reveals every facet of interaction between the patient and the health system, including appointment reminders, phone calls with admitting staff, prescription reminders, physical care, and with adequate surveillance, even points in the clinical journey that happen out-of-network [
5]. This exercise helps locate any gaps in the patient care experience, lending the opportunity to redesign patient pathways to maximize clinical efficiency by focusing on activities most valued by patients [
6]. To get the most out of the patient journey mapping exercise, it is important to identify various elements of the patient and health system interaction, as listed in Table
2. Despite their usefulness, there is no consensus on a universally accepted definition of the patient journey ratified by patients or patient organizations, varying between disease conditions, regions, and mapping process employed [
7,
8].
Table 1
A healthcare system perspective of a patient journey
Trigger event/awareness | The patient self-assesses his or her symptoms, conducts research, considers potential health conditions that may require treatment, and may even reach out to online communities (posing questions on social media, etc.) |
Help | The patient makes initial contact with a health system via a call center, chat, email, mobile, or an in-person visit |
Care | The patient is assessed at a medical facility (physician’s office, hospital, etc.) |
Treatment | The health system provides the patient with both on-site and follow-up care (prescriptions, physical therapy, counselling, or suggested lifestyle changes) |
Behavioral/lifestyle change | The patient makes changes to daily routines and takes part in proactive healing in order to reduce readmissions and promote long-term well-being |
Ongoing care/proactive health | The patient manages his or her care between clinical visits; meanwhile, the health system fosters engagement between the patient and physician in order to enable the patient to address symptoms and maintain good health |
Table 2
Key elements of a patient journey map
Touchpoints | Any point of interaction between a patient and the healthcare system |
Timeline | It is important to denote the amount of time that each interaction (or touchpoint) lasts, the amount of time in between touchpoints, and the overall length of the patient journey |
External influences | Any factors that impact the patient journey that are beyond the health system’s control. For instance, if patient lives at some distance from a healthcare facility |
Internal influences | Any factors that impact the patient journey as a result of the health system’s own operations. For instance, a long wait time to schedule a surgery due to the renovation of a surgical wing within the hospital |
Barriers | Any factors that may prevent the patient journey from moving forward. Examples of common barriers within the patient journey include cost (if the patient is unable to afford continued treatment), time conflicts (such as a hectic work schedule or family obligation), the patient’s mental or emotional state, socioeconomic pressures, and many others |
Published studies have attempted to map patient journeys for individual NCDs in multiple countries and regions (Table
3) [
9‐
14]. As expected, most evidence comes from high-income countries and the corresponding data for LMICs is sparse. Notably, most patient journeys for NCDs begin long before the “trigger” or point of access into the health system [
9]—a fact that is commonly missed by healthcare providers and results in remedial counselling at or after the trigger. Being “aware” of NCD risk factors and adopting healthy lifestyles can prevent or delay the onset of a disease [
15]. It is also important to recognize that NCDs do not occur in silos; many patients face multimorbidity, with each morbidity prompting its own unique journey [
16]. Patients’ perspectives and value-added inclusion can provide both unique and critical insights to healthcare delivery teams in journey mapping. Patients living with NCDs (PLWNCDs) have direct, extensive experience of living with the disease and understand first-hand the impact of the disease on their quality of life and physical function. Chronically ill patients are expected to participate substantially through self-care in managing their adherence to therapy and the safe use of prescribed medicines based on labelling and other information provided to them [
17].
Table 3
Comparison of patient journey mapping approaches for select NCDs
| Breast cancer | HIC, LIC, MIC | Awareness/recognition Diagnosis Coordinated care Treatment Ongoing management |
| Schizophrenia | HIC (Europe) | Premorbid phase/preventive measures Prodromal phase/early detection, early intervention Acute episode/treatment initiation Long-term phase/relapse prevention Recover |
| Musculoskeletal disorders | HIC (Ireland) | First clinician appointment Subsequent clinician appointment Investigations APP appointment Initial referral Additional APP appointment |
| Idiopathic pulmonary fibrosis | HIC (Sweden) | Time to disease diagnosis Medication use Treatment pattern Adherence, persistence, and length of treatment |
| Bladder cancer | HIC (Canada) | Pre-diagnosis (signs/symptoms) Time of diagnosis/pre-treatment During treatment After treatment (living “the new normal”) |
| Peripheral neuropathy | HIC (Kuwait) | GP visit in primary care Blood test General pain management Referral to general hospital Complete investigations Continue general pain management Referral to neurologist in general hospital Advanced investigations Continue general pain management and first-line treatment Referral to neurology specialist in national hospital Advanced investigations and physical examination Continue general pain management and first-line treatment and start second-line or third-line treatment Follow-up, monitoring, and review medications |
Barriers to NCD Care Pathways in LMICs
Patient journeys are context-specific and reliant on national healthcare systems and investments. Since LMICs tend to have fragmented health service delivery, uneven quality of care, and a large informal healthcare sector providing substantial chronic healthcare, the patient journey from initial outreach to continued care is rarely seamless [
18]. Equitable access to health services is far from optimal in many LMICs, as evident from poor patient-to-provider ratios and high out-of-pocket (OOP) expenditure on healthcare [
19,
20]. Whereas in developed nations the OOP expenditure for complete healthcare (data for NCD OOP expenditure is not reported separately) is about 20–25%, it rises to a massive 60% in developing countries like India [
21,
22]. Contributing to the burden, most LMICs invest only a small proportion of their gross domestic product into healthcare expenditure (ca. 4%), much lower than what is needed [
23].
In LMICs, several factors outside the health system also influence decisions to enter or exit the patient journey, and often these choices influence the disease trajectory. Poor health literacy and lack of awareness about risk factors and appropriate entry points into the healthcare system contribute to poor patient outcomes [
24,
25]. In resource-limited settings, unauthorized practitioners propagate ignorance, misconceptions, and misleading guidance that complicate patient pathways further [
26]. Health and morbidity are influenced by behavioral decisions of individuals or their families, genetically inherited health endowments, or the health environment in which people reside. Illness is, therefore, systematically linked to household- and community-level factors [
27]. Other factors shaping health-seeking behavior include age, socioeconomic conditions, presence of comorbidities, perceived family support, duration of disease, and history of early treatment at diagnosis [
28]. The social determinants of health in LMICs, governed by the policy choices and the amount of money, power, and resources that people have, are key to discerning care pathways followed by patients when accessing healthcare [
29]. The differences in healthcare systems, socioeconomic and cultural factors, and population health literacy warrant the need for examining patient journeys independently in the LMIC setting.
Scope of the Study
NCDs often co-occur and share common behavioral and environmental risk factors. The World Health Organization (WHO) has long advocated for an integrated approach for prevention and control of NCDs both at system and service levels, rather than in disease-specific silos [
30]. Therefore, this paper aims to provide a theoretical framework outlining the shared patient journey touchpoints for people living with the major NCDs, particularly CV diseases, diabetes, and mental health disorders, as the leading contributors of NCD-related mortality and morbidity in LMICs [
1]. It further aims to draw upon published literature and secondary sources to review influencing factors and recommend patient-centered strategies to improve the patient journey at each touchpoint.
Methods
The PubMed database was searched to identify relevant literature using the search terms "patient-centered care", “patient journey”, "noncommunicable diseases", “cardiovascular diseases”, “diabetes”, “hypertension”, “dyslipidemia”, “mental health”, “depression”, “anxiety”, “awareness”, “health promotion”, “health literacy”, “patient education”, “screening”, “risk assessment”, “diagnosis”, “treatment decision”, “treatment experience”, “treatment monitoring”, “treatment access”, “adherence”, “compliance”. As a result of the sparse availability of peer-reviewed literature on the topic in LMICs, additionally, relevant articles and reports curated by the authors from the Google database and gray literature were also utilized in this study.
This article is based on previously reported studies and does not contain any studies with human participants or animals conducted by any of the authors.
Discussion
The growing number of people living with chronic diseases is both a measure of success, an outcome of increased life expectancy, and a challenge for healthcare systems in LMICs [
85]. Despite international commitment, the momentum for impeding NCD-related morbidity and mortality has waned since 2010 [
86]. In contrast to developed countries where healthcare delivery remains relatively accessible and inclusive, LMICs require substantial improvements in healthcare delivery to meet the Sustainable Development Goals and achieve Universal Healthcare Coverage [
87]. To effectively alter the current trajectory of NCDs, it is important to review problems and prospects of influencing factors at the micro, meso, and macro levels of healthcare, i.e., at the level of individuals, their households, and communities, as well as at the policy level [
41]. Evidence suggests that patient experience is a key pillar of healthcare quality; therefore, instead of limiting it to in-person interactions between the patient and physician, mapping the entire patient journey is the best way to understand the patient experience and identify existing lacunae [
88].
Traditionally, a patient journey is viewed from the perspective of healthcare providers. It is often perceived to be linear, following a sequential process in a care continuum pathway with a single entry and exit point. The entry point or the start of the patient journey is believed to begin after a “trigger”—an onset of a sign or symptom of a disease. Redesigning of patient pathways based on journey mapping is often undertaken with the purpose of improving healthcare system performance or meeting regulatory constraints [
6]. Traditional patient journey maps also miss the impact of medical protocols followed in patient care [
6].
The patient journey for NCDs starts well before an episode of care and continues after discharge [
89,
90]. The patient journey is also complex with multiple entry and exit points. In practice, care provided to patients with multimorbidity is fragmented, resulting in innumerable hospital appointments with different specialists and concurrent use of multiple medications or polypharmacy. The “treatment-in-silos” approach impacts patients’ lifelong compliance to treatment and further incapacitates patients with advancing age and disability. There is a need to reframe the patient journey as one with touchpoints, where a patient may enter at any one point but often may need support and care at other points. For example, in the framework presented in Fig.
1, the NCD patient’s first touchpoint may well be at “Diagnosis” during an encounter with the health system. They will benefit from education to increase their “Awareness” to help them understand and participate in their care; they may benefit from “Screening” for comorbidity; and enriched monitoring and counselling for “Adherence”.
The concept of “healthcare” has been delineated from “medical care” years ago; still, most healthcare systems today subject PLWNCDs to only physical and laboratory evaluations without properly assessing their mental, social, and emotional well-being [
91]. Following diagnosis, treatment modalities are tailored to the disease rather than the person, leading to altered lifestyle to suit protocols set up for the condition. There is a strong call to action in LMICs to integrate the management of NCDs combined with the “holistic medicine” concept that follows the approach of putting patients’ perceived needs first in providing care not just for physical but also mental, emotional, and spiritual needs [
71].
This can only be achieved through critical assessment of the underlying complexities in patient journeys for NCDs—awareness levels, screening opportunities, treatment protocols, access to care, issues with compliance—to avoid missteps in providing timely and optimal intervention.
It is increasingly evident that many PLWNCDs have specialized expertise and can play a crucial role in identifying what is most meaningful to them and their conditions. The “expert patient” concept where patients with significant knowledge about their disease and treatment take on a larger role in self-management has been explored in the West with noted improvements in symptoms, quality of life, and adherence [
18]. Many healthcare systems in developed countries have found value in moving towards a self-management approach for chronic diseases, utilizing the knowledge and expertise held by “expert patients” [
18,
92,
93]. Replication of this approach in LMICs has seen some success in positively impacting the patient journey. A diabetes peer education program (MoPoTsyo) initiated in rural and urban slum areas of Cambodia trained patients from local communities as peer educators who could then coach other patients in self-management, counsel them on lifestyle changes, and conduct follow-ups [
94]. MoPoTsyo patients had better health outcomes in terms of a higher proportion of patients achieving target glycosated hemoglobin (HbA1C) levels, lower systolic blood pressure, and reduced presence of diabetes foot lesions and also had lower diabetes-related healthcare expenditure compared with diabetes care programs in two other LMICs, Democratic Republic of Congo and the Philippines [
95]. Access to more external resources and a stronger focus on self-management and chronic illness may have contributed to the success of MoPoTsyo [
95]. Meaningfully involving PLWNCDs along common touchpoints in the patient journey for NCDs will help inform the value assessment in healthcare, provide better outcomes, and increase adherence to therapy, leading to a happier and more rewarding patient experience.
Use of mobile- and web-based computing can help in educating individuals at the level of prevention by emphasizing the control of NCD risk factors and, once made aware of their conditions, aids in self-management and adherence to their treatment. A systematic review identified that mobile solutions are more widely available than other technology-based solutions for education on NCDs owing to ease of access, convenient delivery of educational content, and potential to gamify educational learning for chronic illnesses [
96]. Another review from developed countries demonstrated that the use of information and communication technology (ICT) in health promotion behavior resulted in increased physical activity, reduced weight, and healthy behavior change among the participants [
97]. However, there is a dearth of data on the long-term effectiveness of ICT on health-promoting behaviors in LMICs. There is an urgent need to build evidence for ICT use in promoting health behaviors among healthy adults in LMICs and move towards personalized assistance supported by ubiquitous learning [
96,
97].
Social environments have a significant influence on an individual’s health and, in this digital age, online social networks play an important role in health as they control access to resources and opportunities to model one’s behavior [
98]. Several models have been developed and evaluated the use of social media to foster better health behaviors among populations. For example, the Pompilos model was developed to enhance healthcare applications with social media content and ascertain to what extent a person’s health behavior influences the health of others in their social network [
98]. Preliminary evaluation of the model indicated that NCD prevention messages directed to users correlated with increased access to the application and warrants further research [
98]. Most LMICs are progressing towards an ageing population that will accompany a rise in chronic conditions and increased healthcare costs [
99]. From an elderly patient setting in LMICs, technology must prioritize patient-facing innovations that improve quality of life, facilitate communication with providers, and provide decision-support [
99]. Redesigning healthcare models to sustain increased self-management will improve outcomes and reduce healthcare costs. Healthcare applications can be further enhanced by integrating them into “smart city” infrastructures, e.g., the U’Ductor architecture developed in Brazil can increase social collaboration by integrating with city information systems to guide users to hospitals on the basis of the availability of beds, provide traffic updates in medical emergencies, recommend modes of transport on the basis of real-time air quality data, etc. [
100].
Future Perspectives
The COVID-19 pandemic accelerated the digitization of healthcare services as health systems had to adopt telemedicine and other technologies to flatten the curve and help patients in self-isolation receive access to healthcare [
101]. A WHO survey of 194 countries in May 2020 reported severe disruption to prevention and treatment services for NCDs since the beginning of the COVID-19 pandemic [
102]. Preexisting inequities in LMIC health systems will likely exacerbate the effects of the COVID-19 pandemic among vulnerable populations and the care for chronic diseases will likely further worsen along with health outcomes. This may be the result of health system capacity being exceeded, redeployment of health personnel to the frontline of COVID-19 infection, or because of measures placed to address the spread of the pandemic such as lockdowns and restrictions on people’s movement [
103]. A prescient insight into the patient journey for NCDs can help with adopting the WHO guidance to maintain essential services for NCDs. The guidance offers programs of activities across chronic disease management including awareness; prevention and screening; diagnosis; specialist treatment; rehabilitation; and palliative care [
104]. Increase in home-based service support by appropriately trained community health volunteers helps promote self-care, risk assessment, and referral for uncomplicated patients, a cost-effective strategy for prioritizing NCD management [
105]. Being readily accessible healthcare practitioners in LMICs during the pandemic, community pharmacists are well positioned to help manage chronic conditions, promote medication adherence, and help ease the burden on already strained health systems [
103].
Setting healthcare priorities is of particular importance in the LMICs in order to allocate their limited resources toward the most effective interventions. Evidence-based decision-making for NCD prevention and control policies requires reliable and timely data [
106]. The lack of mechanisms to collect high-quality data is a major barrier to successful implementation and monitoring of NCD programs in LMICs [
107]. As a result, NCD policy recommendations at the national and local levels in LMICs are based on evidence from communicable diseases or from studies conducted in high-income countries, which can potentially impact the outcomes of these policies [
107]. Similarly, mapping patient journey for NCDs will require local evidence generation and continual monitoring of evidence to inform strategies to improve the patient journeys in LMICs.
The mounting mental health burden is a growing concern in LMICs, as poverty is known to be associated with increased risk of mental illness. Limited access to psychiatrists and mental health facilities in many LMICs has triggered the pursuit for innovative solutions such as employing community-based health workers to deliver psychosocial therapies supported remotely by specialists [
108]. Additionally, technology-based solutions are being explored in the domain of mental health education and information dissemination, digital screening tools and diagnosis, self-management programs, and system-level efforts to improve mental health [
108]. Several models of ubiquitous computing have been proposed to inform psychotherapeutic practice, often used in the treatment of depression and anxiety disorders [
109]. Mobile and wearable technologies can be utilized to collect an individual’s physiological and environmental measurements and provide psychophysiological insights [
110]. Patient engagement and adherence to online programs in psychotherapeutic treatment can be improved by employing gamification techniques [
109]. Applications monitoring social activities of people with depression can contact caregivers as needed and aid providers in patient follow-up [
111].
In the past, the patient journey for chronic diseases was marred with late diagnosis, “one-size-fits-all” treatment, and access issues creating bottlenecks in the health system. Treatment was often location bound and the patient’s life oscillated between hospitals, providers, and healthcare facilities. Unlike in developed countries, healthcare systems in LMICs continue to follow the traditional, provider-driven, disease-focused approach which must move towards person-centered care integrating patient preferences, needs, and experiences into every phase of the patient journey [
112]. In order to create, implement, and support successful patient journey maps, healthcare organizations must have a deep understanding of the populations they serve—as well as those they wish to serve in the future. The patient needs to be recognized as an integral part of this journey and involved in all stages embracing the “nothing for us without us” sentiment [
113].
Health systems in LMICs must recognize that the patient journey for NCDs starts long before the onset of symptoms and signs. Strategies designed to improve the patient journey must incorporate the patient-centered perspective at each touchpoint of their journey in the healthcare system: awareness, screening, diagnosis, treatment, and adherence. Effective communication strategies for improving health literacy, patient activation, and incorporation of narrative medicine in physician education positively impact the awareness of patients. Use of appropriate risk assessment tools to tailor therapies, integrated management of chronic illness in primary healthcare, shared decision-making, and decision aids ensure timely and accurate diagnosis. Improved access to NCD treatments, embodying the principles of person-centered care and positive therapeutic alliance, requires commitment at a policy level to deliver safe, affordable, and effective care equitably. Long-term management of NCDs entails substantial self-management of their conditions by patients, which can be augmented by pharmacists and nurse-led interventions. The NCD care continuum pathway needs to move from the traditional acute incident management protocol to a public health approach of prevention and delay of disease onset through early identification and management of risk factors; early diagnosis and appropriate management; and good adherence through effective communication and follow-up. In addition, comprehensive palliative care models must be evaluated and integrated into national health policy and action plans.
Digitization has heralded a healthcare revolution with a patient-centric and user-friendly framework that will undoubtedly increase patient engagement. eCare pathways allow better management of patient journeys by facilitating early and accurate diagnosis at the outset and then on the progress of the disease; aiding in personalized care plans tailored to the patient’s genomic makeup and lifestyle; and remote monitoring of patients via digital algorithms to optimize timely treatment interventions. The reduced dependence of digital health on healthcare facilities for care-seeking is an encouraging prospect for LMICs to help bridge gaps in the patient journey for NCDs through empowering patients, improving access to healthcare services, and enhancing efficiency of health systems with innovative, cost-effective, and localized solutions.