6b IMPROVING THE ACCESSIBILITY OF FRONTLINE SERVICES… FOR EQUITABLE CARE AMIDST RAPID GROWTH AND URBANIZATION THE CHALLENGE In rapidly growing urban centers, most residents are near health services. Nonetheless, a range of social and financial constraints can deter individuals and families from seeking care, preventing timely diagnosis of chronic and infectious conditions. Creative and sensitive outreach strategies, new approaches to proactive case finding, and progressive payment models are needed to surmount social and economic cleavages that drive persistent inequities, and to improve the accessibility of timely diagnosis and high-quality care in urban and peri-urban communities. CHRONIC AND INFECTIOUS DISEASES REMAIN UNDIAGNOSED—AND UNTREATED Emerging urban communities experience a large and growing burden of disease from conditions with a slow, progressive presentation—including hypertension, HIV, tuberculosis, diabetes, respiratory illness, mental illness, and vision or hearing problems. Individuals can live with these conditions for years before feeling sufficiently ill to seek care; but delayed diagnosis and treatment can prevent effective management, leading to preventable morbidity and death—and, in the case of infectious disease, onward transmission to family members or others in their communities. World Health Organization surveys conducted from 2007 through 2010 identified high rates of undiagnosed chronic conditions in six middle- income countries, including 2%–17% prevalence of undiagnosed depression; 2%–14% prevalence of undiagnosed angina; and, in South Africa, 50% of the population living with undiagnosed hypertension. In most countries, the same study also found that less than 50% of individuals with specific chronic conditions were engaged in treatment, with particularly high rates of untreated depression, hypertension, chronic lung disease, and asthma.i Estimates also suggest that low- and middle-income countries (LMICs) are home to 147 million undiagnosed cases of diabetes—accounting for 84% of the undiagnosed global burden.ii And for infectious diseases—particularly HIV and tuberculosis—undetected cases represent a stubborn global Japan Trust Fund for OCTOBER 2018 Scaling Up Nutrition IMPROVING THE ACCESSIBILITY OF FRONTLINE SERVICES… FOR EQUITABLE CARE AMIDST RAPID GROWTH AND URBANIZATION challenge. Despite large international investments, estimates suggest that 25% of HIV-positive Many countries individuals don’t know their status,iii while more than 40% of incident tuberculosis cases have deployed (which includes new cases and relapses) go undetected or unreported.iv. lay community health workers Marginalized Populations Avoid Health Services When an individual’s gender expression, sexual orientation, sexual behavior, or profession are (CHWs) into rural criminalized or do not match mainstream social expectations—when the individual belongs to communities. an underprivileged or otherwise marginalized ethnic, religious, socioeconomic, or gender group—or when the individual perceives that a particular disease is stigmatized by society, the person may avoid health services. This may be due to fear of discrimination in the health system and in their communities; disrespectful care from providers; or lack of confidentiality Marginalization of about sensitive health issues. Transgender women in Argentina, for example, were three groups and times more likely to avoid contact with health services if they had previously experienced individuals leads discrimination by health care workers;v and in East and Southern Africa, sex workers cited pervasive hostility from health workers and confidentiality concerns as reasons for avoiding people avoid public-sector health facilities.vi In many countries, HIV-positive members of key populations— health services. In specifically injection drug users, men who have sex with men, and sex workers—are much many countries, less likely to be enrolled in HIV treatment than the general adult population, despite far HIV-positive higher HIV prevalence in these communities.vii members of key marginalized The Urban Poor Can Struggle to Afford Care Financial constraints can keep poor urban families from seeking care or maintaining populations are treatment regimens—particularly for long-term chronic disease management. In India, for much less likely to example, one study found that diabetes patients among the urban poor spent 34% of their be enrolled in HIV income on diabetes care.viii Another study from urban China, found that diabetes patients treatment, must pay between 4 to 16 days’ wages to purchase a month-long supply of insulin.ix (See despite far higher Topic 8b for a discussion of financing and payment strategies to increase affordability.) HIV prevalence. THE PATH FORWARD: TOWARD ACCESSIBLE CARE FOR ALL Active case Finding and Treating Undiagnosed Disease in the Community finding, used for Addressing the burden of undiagnosed disease requires early, proactive detection. Active case infectious disease finding, potentially assisted by cadres of community health workers (CHWs) and combined control and with case management, has traditionally been used for infectious diseases control. In an piloted now for uncontrolled study in peri-urban Mali, daily door-to-door case detection by CHWs appeared to help double early treatment of malaria, nearly halve the rate of febrile illnesses, and reduce detecting other under-5 mortality.x Increasingly, pilot studies also support the feasibility (though not conditions has necessarily cost-effectiveness) of proactive screening strategies for chronic and more complex mixed research diseases, such as stroke detection in Karachi,xi cancer in New Delhi,xii and cardiovascular findings, but has disease risk across four LMICs,xiii often led by CHWs. However, the cost-effectiveness of active produced notable case finding is not necessarily supported by existing literature. Evidence from urban Uganda results in some suggests that active case finding for tuberculosis is not cost-effective unless targeted as part cases. of a contact investigation;xiv and a recent systematic review from sub-Saharan Africa notes that active case finding strategies are associated with extremely poor rates of linkage to onward care, thus limiting their cost-effectiveness despite their theoretical benefits.xv IMPROVING THE ACCESSIBILITY OF FRONTLINE SERVICES… FOR EQUITABLE CARE AMIDST RAPID GROWTH AND URBANIZATION Top Interventions Intervention Evidence Strength Research Findings mHealth Active case finding Moderate Mixed applications offer mHealth for case finding Feasibility Positive promise—for Opportunistic case finding Feasibility Positive example, to Community-based HIV services High Positive identify chronic Internet-based HIV outreach Feasibility Positive conditions even HIV self-testing High Positive when qualified Vending machines Feasibility Mixed personnel are Increasingly, active outreach strategies can be supported by mHealth applications: helping unavailable—but identify chronic conditions even when qualified personnel are unavailable—and potentially need careful improving cost-effectiveness of active case finding strategies. In South Africa, for example, attention to a CHWs deployed a smartphone-based application (hearScreenTM) to identify adults and range of issues. children with hearing deficits, subsequently referring them for specialist attention.xvi In Madagascar, a cervical cancer screening program used smartphones to take snapshots of the cervix and email the images to remotely located specialists.xvii Such strategies have high upside potential in urbanizing centers, where mobile phones are common and network coverage is strong, but current evidence is largely limited to small-scale pilot and efficacy studies.xviii Given the dearth of evidence, mHealth or community-based screening strategies will require careful attention to cost-effectiveness, acceptability, data protection, and rigorous evaluation Community-based of at-scale effectiveness. The 5-year HealthRise program—offering community-based grants in Brazil, India, South Africa, and United States to trial and evaluate innovative cardiovascular services offer a disease and diabetes management strategies, with results expected in 2019—creates an promising strategy opportunity to generate additional research evidence on case detection strategies, and an to overcome important model for embedding rigorous evaluation within experimental approaches for stigma, reach the detecting noncommunicable diseases (NCDs). marginalized, and address the When Opportunity Strikes: Opportunistic Case Finding at Health enormous burden Facilities In contrast to outreach-based active case finding strategies, opportunistic case finding works of undiagnosed to identify subclinical disease during fortuitous contacts with other health services. Proof-of- chronic disease. In concept studies from LMICs suggest that opportunistic case finding and routine testing can Nigeria, for support diagnosis for several conditions, including mental health disorders,xix HIV,xx and example, men who cervical cancer.xxi However rigorous evidence on the effectiveness and cost-effectiveness of have sex with men such strategies is limited. In addition, opportunistic case finding approaches by their very were 9 times more nature can only screen for a handful of conditions, requiring careful prioritization. likely to accept HIV Surmounting Stigma: Direct-to-Community Services testing and Marginalized communities, or individuals facing potential diagnosis of a stigmatized disease, counselling services may be more likely to receive needed care when they can access health services directly in offered directly by their communities, or even in their own homes. In Nigeria, for example, men who have sex a member of the with men (MSM) were 9 times more likely to accept HIV testing and counselling if the service same community. was directly offered by a member of the same community versus referral to a health center; uptake was 21 times more likely among injection drug users.xxii Even for the general OCTOBER 2018 3 IMPROVING THE ACCESSIBILITY OF FRONTLINE SERVICES… FOR EQUITABLE CARE AMIDST RAPID GROWTH AND URBANIZATION population, systematic review evidence suggests that uptake of HIV testing and counselling services is far higher in community-based settings than within health facilities.xxiii Increasingly, health services can also target the virtual (versus physical) communities where marginalized populations congregate. In urban China, for example, MSM volunteers identified members of the MSM community through their profiles on gay social networking sites and recruited them to testing and counselling services via chat rooms, instant messages, and emails.xxiv Internet- based outreach is still in its infancy in LMICS; scale-up will require careful consideration of the privacy, rights, and safety of marginalized populations. Technological advancements and creative marketing also offer opportunities to access frontline services while bypassing direct contact with health providers. HIV self-testing, for example, provides key populations with a convenient and confidential path to learn their status and engage in care;xxv it is also strongly associated with increased coverage of HIV testing.xxvi Research evidence suggests a strong preference for self-testing over facility-based services despite persistent concerns about coercive testing, accuracy, and linkage to follow-up care.xxvii Automated distribution systems (vending machines) have also been used across a wide range of LMICs in an effort to increase to decrease sexually transmitted infections and unwanted pregnancies; however little evidence exists to support their effectiveness, and maintenance and supply chain issues represent common concerns.xxviii SPOTLIGHT HealthRise: A Learning Agenda for Community-Based NCD Control ► Community-based case finding initiatives offer a promising strategy to address the enormous burden of undiagnosed chronic disease. But beyond a handful of feasibility studies, limited evidence is available support their effectiveness and cost-effectiveness, or to guide policymakers on their design and use. To help address this experience and evidence deficit for community-based NCD control (specifically cardiovascular disease and diabetes), in 2014 the Medtronic Foundation began its sponsorship of HealthRise—a $17 million, 5-year initiative targeting communities in Brazil, India , South Africa, and the United States. Following a baseline needs assessment,xxix HealthRise offers small-scale community grants to local partners to run “demonstration projects”; these projects are intended to test and evaluate the effectiveness of community-based approaches to chronic disease detection and management.xxx Interventions underway under the HealthRise umbrella include CHW training and support for home-based screening and care in South Africa;xxxi introduction of NCD screening sites in well-travelled public sites (e.g. grocery stores) in urban Minnesota in the U.S.;xxxii and NCD screening and referral within Indian schools and workplaces.xxxiii The jury remains out on the effectiveness of the HealthRise interventions, but its approach to evaluation and learning deserves wider adoption. From the beginning, HealthRise engaged the Institute for Health Metrics and Evaluation (IHME) as its evaluation partner, and embedded rigorous evaluation of the community grants as a core program feature. IHME will release evaluation findings in the program’s final year—an OCTOBER 2018 4 IMPROVING THE ACCESSIBILITY OF FRONTLINE SERVICES… FOR EQUITABLE CARE AMIDST RAPID GROWTH AND URBANIZATION important global public good for all countries facing an increased burden of chronic NCDs.xxxiv Vietnam Healthy Hearts ► To address and alleviate Vietnam’s high burden of undiagnosed hypertension, in 2016 the Novartis Foundation launched “Communities for Healthy Hearts”—a pilot project in Ho Chi Minh City, implemented by the nongovernmental organization PATH, to expand awareness, diagnosis, and effective management. Healthy Hearts provides end-to-end support across the cascade of care, from awareness to diagnosis, referral, treatment initiation, and adherence support. The program has adopted a forward-looking approach to accessible NCD screening, setting up over 490 free checkpoints in non-traditional yet convenient locations, such as tea shops, markets, and community leaders’ homes. Healthy Hearts is expected to undergo a full evaluation in 2018. Preliminary results, though not rigorously evaluated against a counterfactual, are promising; 124,358 individuals aged 40+ had received hypertension screening through the program by January 2018, and 54.5% of those with elevated blood pressure had been enrolled on treatment—compared to just 13% treatment of hypertension at the national level.xxxv ENDNOTES i Perianayagam Arokiasamy et al., “Chronic Noncommunicable Diseases in 6 Low- and Middle- Income Countries: Findings From Wave 1 of the World Health Organization’s Study on Global Ageing and Adult Health (SAGE),” American Journal of Epidemiology 185, no. 6 (15 2017): 414–28, https://doi.org/10.1093/aje/kww125. ii Jessica Beagley et al., “Global Estimates of Undiagnosed Diabetes in Adults,” Diabetes Research and Clinical Practice 103, no. 2 (February 2014): 150–60, https://doi.org/10.1016/j.diabres.2013.11.001. iii Amina J. Mohammed and Tedros Adhanom Ghebreyesus, “Healthy Living, Well-Being and the Sustainable Development Goals,” Bulletin of the World Health Organization 29 (2018): 590-590A, http://dx.doi.org/10.2471/BLT.18.222042. iv Centers for Disease Control and Prevention, “DGHT TB Factsheet” (Centers for Disease Control and Prevention, September 2018), https://www.cdc.gov/globalhivtb/images/DGHT-TB-Factsheet.pdf. v María Eugenia Socías et al., “Factors Associated with Healthcare Avoidance among Transgender Women in Argentina,” International Journal for Equity in Health 13, no. 1 (September 27, 2014): 81, https://doi.org/10.1186/s12939-014-0081-7. vi Fiona Scorgie et al., “‘We Are Despised in the Hospitals’: Sex Workers’ Experiences of Accessing Health Care in Four African Countries,” Culture, Health & Sexuality 15, no. 4 (April 1, 2013): 450– 65, https://doi.org/10.1080/13691058.2012.763187. vii UNAIDS, “Miles to Go: Closing Gaps, Breaking Barriers, Righting Injustices” (Geneva: Joint United Nations Programme on HIV/AIDS, 2018), http://www.unaids.org/sites/default/files/media_asset/miles-to-go_en.pdf. viii Ambady Ramachandran et al., “Increasing Expenditure on Health Care Incurred by Diabetic Subjects in a Developing Country: A Study from India,” Diabetes Care 30, no. 2 (February 1, 2007): 252–56, https://doi.org/10.2337/dc06-0144. ix Chenxi Liu et al., “Insulin Prices, Availability and Affordability: A Cross-Sectional Survey of Pharmacies in Hubei Province, China,” BMC Health Services Research 17, no. 1 (August 24, 2017): 597, https://doi.org/10.1186/s12913-017-2553-0. x Ari D. Johnson et al., “Proactive Community Case Management and Child Survival in Periurban Mali,” BMJ Global Health 3, no. 2 (March 2018): e000634, https://doi.org/10.1136/bmjgh-2017- 000634. xi Maria Khan et al., “Can Trained Field Community Workers Identify Stroke Using a Stroke Symptom Questionnaire as Well as Neurologists? Adaptation and Validation of a Community Worker OCTOBER 2018 5 IMPROVING THE ACCESSIBILITY OF FRONTLINE SERVICES… FOR EQUITABLE CARE AMIDST RAPID GROWTH AND URBANIZATION Administered Stroke Symptom Questionnaire in a Peri-Urban Pakistani Community,” Journal of Stroke and Cerebrovascular Diseases: The Official Journal of National Stroke Association 24, no. 1 (January 2015): 91–99, https://doi.org/10.1016/j.jstrokecerebrovasdis.2014.07.030. xii Krithiga Shridhar et al., “Cancer Detection Rates in a Population-Based, Opportunistic Screening Model, New Delhi, India,” Asian Pacific Journal of Cancer Prevention : APJCP 16, no. 5 (2015): 1953–58. xiii Thomas A. Gaziano et al., “An Assessment of Community Health Workers’ Ability to Screen for Cardiovascular Disease Risk with a Simple, Non-Invasive Risk Assessment Instrument in Bangladesh, Guatemala, Mexico, and South Africa: An Observational Study,” The Lancet. Global Health 3, no. 9 (September 2015): e556-563, https://doi.org/10.1016/S2214-109X(15)00143-6. xiv Juliet Nabbuye Sekandi, “Effectiveness of Community Active Case Finding of Undetected Tuberculosis Disease Among Urban Residents in Uganda” (Dissertation, 2013), https://getd.libs.uga.edu/pdfs/sekandi_juliet_n_201312_drph.pdf. xv Jennifer Kane et al., “A Systematic Review of Primary Care Models for Non-Communicable Disease Interventions in Sub-Saharan Africa,” BMC Family Practice 18 (March 23, 2017), https://doi.org/10.1186/s12875-017-0613-5. xvi Shouneez Yousuf Hussein et al., “Smartphone Hearing Screening in MHealth Assisted Community- Based Primary Care,” Journal of Telemedicine and Telecare 22, no. 7 (October 2016): 405–12, https://doi.org/10.1177/1357633X15610721. xvii Rosa Catarino et al., “Smartphone Use for Cervical Cancer Screening in Low-Resource Countries: A Pilot Study Conducted in Madagascar,” PLOS ONE 10, no. 7 (July 29, 2015): e0134309, https://doi.org/10.1371/journal.pone.0134309. xviii Kate Michi Ettinger et al., “Building Quality MHealth for Low Resource Settings,” Journal of Medical Engineering & Technology 40, no. 7–8 (November 2016): 431–43, https://doi.org/10.1080/03091902.2016.1213906; David Peiris et al., “Use of MHealth Systems and Tools for Non-Communicable Diseases in Low- and Middle-Income Countries: A Systematic Review,” Journal of Cardiovascular Translational Research 7, no. 8 (November 2014): 677–91, https://doi.org/10.1007/s12265-014-9581-5. xix V. Patel et al., “Detecting Common Mental Disorders in Primary Care in India: A Comparison of Five Screening Questionnaires,” Psychological Medicine 38, no. 2 (February 2008): 221–28, https://doi.org/10.1017/S0033291707002334. xx Ingrid V. Bassett and Rochelle P. Walensky, “Integrating HIV Screening into Routine Health Care in Resource‐Limited Settings,” Clinical Infectious Diseases 50, no. s3 (May 15, 2010): S77–84, https://doi.org/10.1086/651477. xxi Padmaja Ramesh Kulkarni et al., “Opportunistic Screening for Cervical Cancer in a Tertiary Hospital in Karnataka, India,” Asian Pacific Journal of Cancer Prevention 14, no. 9 (September 30, 2013): 5101–05, https://doi.org/10.7314/APJCP.2013.14.9.5101. xxii Sylvia Adebajo et al., “Evaluating the Effect of HIV Prevention Strategies on Uptake of HIV Counselling and Testing among Male Most-at-Risk-Populations in Nigeria; A Cross-Sectional Analysis,” Sexually Transmitted Infections 91, no. 8 (December 2015): 555–60, https://doi.org/10.1136/sextrans-2014-051659. xxiii Jaelan Sumo Sulat et al., “The Impacts of Community-Based HIV Testing and Counselling on Testing Uptake: A Systematic Review,” Journal of Health Research 32, no. 2 (February 22, 2018): 152–63, https://doi.org/10.1108/JHR-01-2018-015. xxiv Huachun Zou et al., “Internet-Facilitated, Voluntary Counseling and Testing (VCT) Clinic-Based HIV Testing among Men Who Have Sex with Men in China,” PLOS ONE 8, no. 2 (February 13, 2013): e51919, https://doi.org/10.1371/journal.pone.0051919. xxv Nitika Pant Pai et al., “Supervised and Unsupervised Self-Testing for HIV in High- and Low-Risk Populations: A Systematic Review,” PLOS Medicine 10, no. 4 (April 2, 2013): e1001414, https://doi.org/10.1371/journal.pmed.1001414. xxvi Pitchaya P. Indravudh, Augustine T. Choko, and Elizabeth L. Corbett, “Scaling up HIV Self-Testing in Sub-Saharan Africa: A Review of Technology, Policy and Evidence,” Current Opinion in Infectious Diseases 31, no. 1 (February 2018): 14–24, https://doi.org/10.1097/QCO.0000000000000426. xxvii Carmen Figueroa et al., “Attitudes and Acceptability on HIV Self-Testing Among Key Populations: A Literature Review,” AIDS and Behavior 19, no. 11 (November 2015): 1949–65, https://doi.org/10.1007/s10461-015-1097-8; Indravudh, Choko, and Corbett, “Scaling up HIV Self- Testing in Sub-Saharan Africa.” OCTOBER 2018 6 IMPROVING THE ACCESSIBILITY OF FRONTLINE SERVICES… FOR EQUITABLE CARE AMIDST RAPID GROWTH AND URBANIZATION xxviii Kerina Tull, “Vending Machines Used for Contraceptives in Developing Countries” (United Kingdom: K4D Helpdesk, May 25, 2017), https://opendocs.ids.ac.uk/opendocs/handle/123456789/13088. xxix Alexandra Wollum et al., “Identifying Gaps in the Continuum of Care for Cardiovascular Disease and Diabetes in Two Communities in South Africa: Baseline Findings from the HealthRise Project,” PloS One 13, no. 3 (2018): e0192603, https://doi.org/10.1371/journal.pone.0192603. xxx Abt Associates, “What Is HealthRise?,” HealthRise, 2015, https://www.health-rise.org/about- healthrise/what-is-healthrise/. xxxi Abt Associates, “HealthRise South Africa,” HealthRise, 2015, https://www.health- rise.org/healthrise-south-africa/. xxxii Abt Associates, “Pillsbury United Communities,” HealthRise, 2015, https://www.health- rise.org/healthrise-us/pillsbury-united-communities/. xxxiii Abt Associates, “MAMTA Health Institute for Mother and Child (MAMTA HIMC),” HealthRise, 2015, https://www.health-rise.org/healthrise-india/mamta-health-institute-for-mother-and-child- mamta-himc/. xxxiv Institute for Health Metrics and Evaluation, “HealthRise,” IHME, 2018, http://www.healthdata.org/medtronic-healthrise. xxxv “Improving Hypertension Management and Control in Vietnam” (Communities for Healthy Hearts, March 2018), https://path.azureedge.net/media/documents/CH2_Factsheet_082018_EN.pdf. 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