Comprehensive value-based cancer care in India: Opportunities for systems strengthening

Introduction

India ranked 145^th out of 195 countries and territories in the healthcare access and quality index (HAQI) in 2016, trailing behind neighbouring China (48^th), Sri Lanka (71^st) and Bangladesh (132^nd)1. The HAQI placement of India indicates that almost a fifth of the global population which resided in the country in 20162 did not have access to high-quality healthcare, if any access at all. Both access and quality are key components of achieving universal health coverage (UHC)3, a sustainable development goal for 20304. However, progress towards UHC in India is hampered by the staggering level of out-of-pocket expenditure (OOPE) on health (over 62% in 2018)2, with cancer causing the highest OOPE5, leading millions overall into impoverishment6.

Cancer was the fourth leading cause of death in India in 20177, and there were 1.15 million new cases in 2018 with an expected doubling of incidence by 2040 based on accounting of demographic changes8. Cancer care in India is concentrated at tertiary hospitals and major cancer centres in urban areas with gaps in infrastructure and human resources that, among other factors, hinder delivery of high-quality cancer care9. Further, there is a ‘north–south divide’ between northern and better-resourced southern States, though intra-State differences also exist9. The COVID-19 pandemic has only worsened prospects for cancer patients with infection control measures delaying presentation for diagnosis and treatment, shifting patients from curative to palliative care, as well as causing worse COVID-19 outcomes for individuals with cancer who are infected with SARS-CoV-210. Specifically, in 2020, oncology services in India witnessed a 54 per cent decline in new patient registrations, 37 per cent reduction in outpatient chemotherapy and screening activities at 25 per cent of normal levels11. Between 18,159 and 53,626 life-years are estimated to have been lost due to delayed diagnosis and treatment of cervical cancer alone so far12.

India is presently at an opportune moment to reset and revise its healthcare system to truly meet the needs of its populace by prioritizing what is valued by its primary beneficiaries – patients. The 2018 launch of the Ayushman Bharat (Healthy India) reform has set India on an ambitious and contentious path to improve the health system131415. The Ayushman Bharat has two arms – Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB-PMJAY) (National Health Protection Scheme), which seeks to provide financial protection for the poor through publicly funded health insurance coverage of nearly 500 million people, and the Comprehensive Primary Health Care Programme1314. The former is focussed on secondary and tertiary hospital-based care, while the latter serves as a restructuring of the Indian primary healthcare system. Various foundational shortcomings have been cited, including inadequate budgetary allocations to practically strengthen primary care beyond the creation of health and wellness centres (HWCs)1516. The AB-PMJAY, as presently structured, serves to fund the private health sector without adequate regulatory mechanisms in place instead of investing in the public healthcare delivery16171819. Policy capacity analysis of the Government of India reveals deficits in both operational and analytical capabilities to implement and realize the goals of the AB-PMJAY20. Redirecting the trajectory of the Ayushman Bharat through value-enhancing changes could help avoid pitfalls of previous efforts, including earlier stages of the Ayushman Bharat itself.

Examining the case of cancer as a test case for enhancing value-based care can provide lessons for a broader health systems reform, including consideration of gender-related challenges that are of inherent value to patients21. For example, the burden of informal caregiving for children, elderly and sick often falls on women and has only worsened with the COVID-19 pandemic22. Women also face stigma associated with cancer, particularly cancers perceived to have links with reproduction (e.g. breast cancer), or are socially assigned to sexual transgressions (e.g. cervical cancer)23. India is primed for improving cancer care, including and especially for women, for example, given existing capacities of the health workforce. A recent study on cervical cancer screening demonstrated that the knowledge of healthcare professionals regarding symptoms and risk factors is over 75 per cent24. This review provides an overview of the value-based healthcare approach, identifies areas for enhancing the objectives of value-based care and proposes health system strategies to improve comprehensive value-based care in India within the current context, focusing on implications for women’s cancers.

Value integration

Value-based care is premised on using value generated for the user – patients – as central to health system performance assessment and improvement2526. It shifts the focus of health systems strengthening from maximizing the volume of services delivered to optimizing the outcomes achieved according to patient need2526. Albeit important, outcomes are prioritized over input considerations of structure and process by employing financial incentives, eg. outcome-based payment structures, that target clinical outcomes and require meeting specific performance criteria. Through this approach, the value-evaluative equation incorporates non-monetary (outcomes) and monetary (costs) components. As per the model developed by Porter (2010)26, the results express outcomes of each patient group [condition(s)-specific] with a similar set of needs relative to costs of the full cycle of care for that patient group. Patient value can be further enhanced through the value-based geography of care model and leveraging its three domains: location of care (with the highest effectiveness, efficiency and convenience to patient), integration across time and optimal combination of healthcare personnel27. In practical terms, this approach to value integration is principally focussed on clinical outcome achieved per dollar expended, and while centred on the patient, it does not fully incorporate the foundational characteristics of patient-centeredness or its multidimensionality, including patient experience and preferences28. A systematic review of value-based initiatives implemented to-date demonstrates the limited application of the value-based approach – over a third of initiatives focus on financial outcomes and cost-savings. Further, out of the 47 studies included in the review, only 16 used patient-reported outcome surveys29.

The pathway to an expanded definition of value-based care will require synergy with different aspects of patient-centeredness and reconsideration of including process- and structure-oriented indicators in performance evaluation. The WHO-integrated people-centred health services approach highlights this need30. Both value-based care and patient-centered care provide a compatible28 and quality-oriented313233 health systems goal to further. The use of value-based payments to enhance equity34 demonstrates this compatibility of value generation for the system and the patient-centeredness of addressing equity concerns. Efforts to generate high-quality cancer care and health systems33, in turn, require holistic and comprehensive value-based care that effectively reflects patient centricity with its various characteristics and dimensions. The ‘triple-value model’35, for example, incorporates personal, technical and allocative value. It was designed to enhance patient safety and, in turn, healthcare value in a manner accounting for patient centricity. The model promotes patient engagement in ensuring the safety of care, which has a direct impact on patient experience, while simultaneously considering resource allocation issues at the systems level35.

Patient centricity

There is growing research to not only understand patient centricity but also identify strategies to achieve it at the systems level. This requires, at its foundation, recognizing the core characteristics of patient centricity – heterogeneity36 and ‘patient complexity’37.

There is heterogeneity across individuals, including in the same patient group, and over different contexts and circumstances that should be considered while simultaneously seeking to understand commonalities to develop a blueprint for value-based care. Sources of patient heterogeneity that demands examination are demographics, preferences and clinical factors (e.g. severity of disease, disease history and genetic profile)38.

Various systematic reviews have sought to define the dimensions of patient-centeredness and develop a taxonomy of patient values and preferences. One such review found the core dimensions of patient-centeredness as ‘patient as a unique person, patient involvement in care, patient information, clinician–patient communication and patient empowerment’39. Another identified that value information garnered in the literature pertained mainly to patients themselves, expectations of health professionals and interactions between the patients and healthcare professionals40. Further, the main themes identified were autonomy, compassion, empowerment, partnership, professionalism, responsiveness and patient uniqueness40. Taking a heterogeneity perspective, each of these should be assumed to not have a singular and standard value or preference ‘setting’.

Moreover, understanding values and preferences according to treatment burden41 and from a ‘patient complexity’ perspective, accounting for the workload on patients from the demands of care and patient capacity to respond to these demands37 is essential to promote patient-centeredness with the overall aim of improving quality of care and quality of life at the end of life. The workload aspect comprises the patient’s time and energy to undertake activities of daily living and manage care demands. The capacity aspect relates to factors that impact the patient’s ability to engage in activities and demands, such as functional status and socioeconomic or sociodemographic standing37.

Patient complexity assessment does not currently extend to comprehensively incorporate the triple burden faced by patients – the experience of the disease itself, navigation of the health system to access care and administration of the actual care. These burdens can negatively reinforce each other and accumulate over time to generate adverse effects37. There can be an additional workload due to multi-morbidities41 and complexities based on the social, cultural and health systems contexts in which patients experience disease and death which have yet to be understood. Furthermore, demographic variables and their influence also bear consideration. For example, the informal caregiver burden on women can overstretch their workload when they fall ill in terms of both their own care and that of others424344. Efforts to apply a complexity model should seek to fully acknowledge the workload on patients and value the capacities that patients possess as this can improve the people-centeredness of care.

Taken together, patient heterogeneity and complexity are the features of a generative process that can facilitate a transition from patient centeredness to patient empowerment45. This can in turn lead to the co-production of healthcare, which is a valued patient goal and can help effectively achieve comprehensive value-based care4647.

Landscape of cancer care in India

The 2012 convening of the National Cancer Grid (NCG) in India was a major step towards standardizing and delivering high-quality cancer care4849. The NCG is a consortium of over 230 cancer centres (to-date) within the country and functions as a platform for exchange of evidence and expertise, such as the production of evidence-based management guidelines, training and research114849. The AB-PMJAY has linked with the NCG to expand cancer care and to implement the inclusion of cancer treatment under its Health Benefits Package 2.0 in 2019, specifically for secondary and tertiary care hospitalization50. The operational framework of a national cancer screening programme for breast, cervical and oral cancers was outlined in 20165152 in line with the Comprehensive Primary Health Care Programme of Ayushman Bharat53 and the National Programme for Prevention and Control of Cardiovascular Disease, Diabetes, Cancer and Stroke54, and screening has also been integrated into the AB-PMJAY. While these strides are promising, they have yet to be translated into access to screening and treatment for most in the country55. Nevertheless and despite its shortcomings, a renewed national commitment to health and large-scale government financing of care across the cancer continuum through the AB-PMJAY have set the stage for the pursuit of value-based and patient-centered cancer care.

The NCG introduced the Choosing Wisely India (CWI) initiative to identify ‘low-value or potentially harmful practices’ within the national cancer care system, guided by a task force of diverse stakeholders that included patient and patient advocacy representation4856. The CWI was initiated to drive performance improvements for the delivery of high-value cancer care48. A list of 10 recommendations was developed to avoid common medical practices with evidence of causing unnecessary harm. The list is intended to serve as a launch point for review and shared decision-making by patients and providers56.

Actionable strategies for comprehensive value-based cancer care

Comprehensive value enhancement of cancer care in India requires compliance with the core characteristics of patient-centeredness – heterogeneity and complexity – as these are not adequately captured in the traditional designation of value-based care. The Table outlines each of these characteristics alongside examples of strategies that can be implemented for value-enhancement of cancer care in India and the potential impact on women’s cancer care.

As India proceeds in its healthcare evolution, care should be tailored from its onset to identified sources of patient heterogeneity. These can help carefully adjust care modalities, for example, adjust therapeutics to patient health status, response to treatment and existence of side effects or complications and life expectancy57. Porter (2010)26 outlined a hierarchy of outcome measurement with three tiers, the health status achieved (e.g. survival and disease control), process of recovery (e.g. treatment time and access) and sustainability of health (long-term consequences of therapy), which has been applied to breast cancer61. Patient-reported metrics are necessary across these tiers of outcome measurement as well as in terms of process and structure, which require reintegration into the healthcare value equation. Individualization of care should therefore be measured through patient-centered metrics (e.g. patient-reported experience and outcomes measures) that span the full journey to assess the patients’ experience throughout their care pathway. Such metrics need to also be included in value-based evaluations to effectively monitor an expanded definition of value-based care38. An example of such a metric may be the value of individualized care (expected value of individualized care)62. Moreover, development of the National Cancer Database for Cost and Quality of Life in India holds promise as it is intended to serve as a country-specific open-source repository of data on OOPE associated with cancer alongside health-related quality of life scores63. This platform could be expanded to incorporate comprehensive value-based care criteria as well.

Similarly, addressing patient complexity requires new and revamped strategies such as the creation of an integrated national patient navigation system that follows care pathways. There is extensive evidence on the efficacy and relevance of well-designed patient navigation on improving participation in cancer screening and adherence to follow up diagnostics6465, including related to cancer care in India66. Patient navigators need to be trained in case management to offer patients guidance through the cancer care system and to address structural and cultural barriers to care (e.g. stressful interactions such as management of health claims, coordination of care, as well as identifying and understanding resources to administer self-care to adhere to clinical advice). Tata Memorial Centre and Tata Institute of Social Sciences have already launched the Advanced Diploma in Patient Navigation (KEVAT)67, the first of its kind in India, to provide “structured patient support system for cancer care that will form a bridge between patients and access to care” 68. Nationwide scale-up of a training model such as KEVAT through the Ayushman Bharat, specifically of healthcare personnel at its Comprehensive Primary Health Care Programme with Health and Wellness Centres, could be the first step to offering extensive support, guidance and relief for overburdened patients. Advanced training could help tailor such support to patient-specific needs, and availability of navigators in both clinical and community settings could then expand their reach and impact. This would need to be coupled with relevant financing and infrastructural developments to build a complete national patient navigation system. Community-based patient support groups are a necessary complement to the navigation system as trusted informal spaces to promote shared understanding and reciprocity. Moreover, technological innovations for improved patient self-management, especially affordable options for administering such care, are critical to upgrade healthcare in India. Use of deliberative democracy approaches59, such as through public reasoning, can produce a culture of public debate in health decision-making for continual assessment and reassessment of value-based care, how it is defined and how this definition can translate through the health system, including the cancer care system.

The strategies outlined in Table have important implications for women’s cancer care. Notably, each provides an opportunity for furthering gender-responsiveness in the Indian health system through more personalized care. Currently, there is substantial room for consideration of biological, social, cultural, demographic and economic factors and the interaction of these in impacting women’s health access, utilization and outcomes. Investigating patient navigation pathways can help identify specific systemic weak spots in delivering comprehensive value-based care for each patient, irrespective of condition(s), to address gender-related disparities in patient-centeredness of care. This could not only improve women’s cancer care but also bring attention to gender diversity in cancer care and recognition of heterogeneity across the spectrum of gender identities. Moreover, value-enhancing strategies such as expanded use of patient-centered metrics has high acceptance among patients, including breast cancer patients6970, and their use in randomized control trials of health interventions, which remains low58, should be made mandatory.

Given the current state of healthcare in India, value-enhancing policies and translational actions should be grounded by re-prioritization of primary healthcare. Primary care is principled on being person-focussed60 and can best deliver on the demands of patient-centeredness71. Comprehensive value-based integration would therefore occur from the promoted entry point into the health system.

Overall, this review provides a rationale on and proposes strategies for comprehensive value-based care. Specifically, it advocates for multi-characteristic and multidimensional consideration of patient centricity and promotes consideration of structural and process inputs alongside outcomes as part of performance assessment of the new generation of health reform in India through the Ayushman Bharat platform. Implementation of proposed strategies may be considered with state level variations in cancer in mind72. In the case of cancer, healthcare delivery innovations can effectively bring even complicated care closer to home. For example, follow up after chemotherapy can occur at the primary care level through use of optimal tasking and telemedicine73. The argument for including other characteristics of patient centricity, i.e., heterogeneity and complexity, and taking account of the full patient journey does not preclude or replace previously defined elements of value-based care. Indeed, the main premise of expanding value-based care is to make it more comprehensive as countries apply different policy and practice levers5659 for value-enhancement in healthcare. Given the extensive investment in the cancer care system in India, the development of comprehensive value-based cancer care can serve as a test case and proof of concept for the rest of the health system. Furthermore, focusing on women’s cancer can mandate overall attention to gender transformative design and implementation within the health system.