Our Health

Health seekers need care and guidance in making the journey from seeker to patient, before diagnosis. They require assistance in identifying appropriate avenues of care, and often rely on their own lived experiences and those of their social networks to do so.

Our research finds that a seekers’ journey until successful diagnosis is often complicated, and comes with high physical, emotional and financial costs. Since the system is often only equipped to recognise a patient after a successful diagnosis, patients are left to navigate the initial stages with minimal formal guidance, causing delays in treatment and presentation of care. In some cases, seekers even turn to alternate, more accessible, forms of care.

This leads to great out-of-pocket expenditure for the seeker, a damaged perception of the healthcare system, and poor health outcomes.

Seekers need various forms of support to physically, emotionally and financially navigate a complex, at times bureaucratic public health system. 

Our research finds that while there is a large demand for this, the lack of formalised roles or solutions means that this support is provided largely by unregulated actors, such as touts or pharmacists, who are accountable neither to the seekers nor the system. 

Seekers using these unregulated platforms are often subject to great out-of-pocket expenses, as they embark on complicated navigational journeys and need to pay for touts, bribes to navigate these. They are also subjected to multiple such healthcare loops due to misinformation.

The TB Early Identifier helps a trained chemist spot early symptoms of TB. Pharmacists are trained and supported with technology, including digital checklists of common symptoms that are updated by an upstream actor such as a state level health authority. A referral slip is provided by the pharmacists to help make the care journey at the Wellness Clinic more efficient for both patients and providers.

How might we use digital technologies to reduce the cost of capacity building among pharmacists?

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The Wellness Center builds on the idea of community clinics to provide not only direct healthcare but also other services, such as nutritional care, digital health services, health financing and support, that are direct healthcare adjacent, yet incredibly important to the overall health and wellness of an individual and the community in general. The Wellness Center reflects an understanding of healthcare as a journey that moves through diagnosis, recovery, continued care and recovery.

How might we create back-end channels for the healthcare workers or volunteers to receive consistent support or information when required so that they can confidently provide the services to the health seekers? 

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Our participants showed that they were repeatedly not in control of their health data. Across providers, they faced challenges such as long drawn out or incorrect diagnosis, patchy treatment regimens, cost of care, frustration from seeing multiple providers, discontinuation of medication like HIV, etc. 

This creates an opportunity to reimagine the health data to rethink what kind of data are collected and how they can benefit patients. A seeker’s health information should follow her across all touchpoints of healthcare. This data, apart from contributing to the health system’s operational efficiency, should also be made available for seekers in formats that help them understand their health journeys better and have more understanding of and control over their care choices.

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The health seeker profile is a combination of a medical record as well as a description and evaluation of other critical factors that could influence their health-seeking behavior. These factors include their financial status (financial health), their living conditions (environmental health), their mental/​emotional health, and the strength of their social network (social health) that can support them during medical crises.

How might we support healthcare providers and staff members to create more safe spaces for health seekers to share relevant details about their different health strands? 

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Through a healthcare journey, a health seeker has to make important financial, emotional, social, and spiritual decisions and sacrifices that have consequences on their health and the health of their families. These decisions take the form of​‘tradeoffs’, where certain strands are prioritised over others — like the need for a day wage may be chosen over the need for a vaccination, which may require skipping a day of work.

Our research shows that while seekers are expected to make multiple trade-offs in favour of their physical health, they perceive risk differently than their health providers. For example, reproductive health is often prioritised over other forms of physical health. In response to this, the system often withholds risks associated with diagnosis or treatment, because they do not trust the patient with making the right decision, or due to a lack of time to explain.

This severely impacts seekers because it discourages them from seeking or receiving appropriate care when required. It also results in seekers pursuing alternate sources of care, leading to late presentation for diagnosis and care and avoidable system burdens.

While health seekers subscribe to an expansive view of their health, the health system is often singularly focused on physical health. As a result, for health seekers, a number of prescribed preventive and curative advisories and treatment regimens can appear out of sync with their own perception of what is good for their health. Project ARC found that individuals’ perception of their health was expansive; participants identified multiple components of health, which we see are interwoven​‘strands’: financial, emotional, spiritual, social, and physical. Thus, employing a more expansive view of health and integrating this into design can enable individuals to make fewer trade-offs between the different facets of their health and therefore increase their engagement and satisfaction with care.

All the strands that make up the idea of health for seekers should be acknowledged and considered during the course of their health journey.

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Our Health is a community level implementation of the public health system that is regulated and guided by upstream actors such as state or federal health authorities. Our Health coordinates and implements all ongoing health activities in the community including health communication, preventive interventions, regulation, capacity building and training of non-regular care providers such pharmacists, among others activities.

At the community level, Our Health fosters a community of practice around health and wellness, led by experts such as doctors and including other actors such as pharmacists, community health workers, community leaders and even family members of health seekers. In this way Our Health seeks to maximize its impact on the health and wellness of community members within the limited resources it has access to.

The digital layer of this system plays a dual role. Firstly, it provides a low friction interaction layer for health seekers, who, through an app or the website, can seek knowledge, make bookings, access their health data and coordinate with health providers during long health journeys among other things. Secondly, it creates a coherent medical and wellness record of seekers for local as well as upstream providers and experts, raising efficiency of care provisioning and contributing towards data driven decision making at the policy level.

How might we nudge and convince skeptical public health officials to include local stakeholders in managing public health at the local level?

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Health nodes are a way of formalizing networks of care around health seekers; a network intended to reduce the burden on community health workers by bringing together family members, neighbours or friends who can potentially become a health node for the seeker. Health nodes may accompany health seekers on clinic visits, manage their health records for them, assist them with adherence, manage their health finances etc. Given the level of comfort and intimacy these actors share with the patient, there is potential to address other strands of health like emotional, social, and spiritual, which might be harder to address institutionally through formal structures of care. 

How might we create channels between the informal caregivers and the formal health workers? 

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Place-based or contextualized health information refers to health information that has been adapted for the context that target communities inhabit. Such information makes it easier for receivers to understand it as it is related to the community’s socio-cultural context, further opening up a tangible path for greater uptake and action. The local cookbook blog, an example of this, is locally curated with oversight from more upstream actors. Similarly, contextualized awareness campaigns around disease burdens that are common in a community (for example TB) make them relevant and responsive to local realities. 

How might we apply the learnings from the successes and failures of the existing practices on contextualizing health information at the local level for vulnerable communities that have seen large demand and uptake on one hand and convenience of implementability on the other?

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Patients are part of an expansive social network, which includes family, friends, neighbour’s and non-formal health providers among others. When health-care needs arise, this network significantly influences patient behaviour, and the latter relies on this network for care, guidance and support. The care network helps patients identify avenues of care, act upon health needs, balance multiple strands of health and more.

By failing to leverage this network in a patient’s treatment, the system does not equip existing care-givers with information and skills that could improve a seeker’s health journey. Seekers are also reluctant to accept treatment plans that do not account for their roles within this social network.

When these social relationships are not accounted for in treatment plans, patients resist accepting the proposed treatment, or struggle to sustain their care path.

One of the key issues that Project ARC identified was that health seekers, at times, delay their care by complicating their health journeys. This might be due to lack of awareness and knowledge regarding the diseases and their options to seek care. However, one can design to address these challenges by ensuring a more proactive outreach and enabling seekers’ participation their care journeys.

The health system should be proactive in reaching health seekers and help them make the right decisions in their health journeys. Furthermore, there should be an active invitation to health seekers to participate in their own care, seeding ways of engagement that creates more personalised, sustainable and trusting journeys of care.

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Empathetic, humane dialogue in an understandable language, is essential for providing effective care. It is critical in creating a partnership between the seeker and provider where both have the space to contribute meaningfully to the healthcare journey.

According to our research these spaces that are vital for important health discussions — like setting financial expectations, sharing the need for certain medicines, preparing for side effects, understanding the social context of the patient, and for the patient to share their feedback — are often missing in clinical settings.

The absence of this dialogue leaves the seeker feeling confused, disempowered, ill-equipped in managing their own health journey, and unable to deal with their side effects. It can also have a damaging impact on a seeker’s healthcare journey, leading to drop-offs, increased financial stress and further health complications.

Upon diagnosis, seekers with serious ailments embark on an emotional transition from seeker to long-term patient.

While health providers view such diagnosis and identification of an appropriate treatment plan as success, this is often a daunting experience for the seeker because of the trauma they experience from the diagnosis. Despite this, they are required to make this transition swiftly and without time and support.

The absence of necessary support during this period traps people in a liminal space between seeker and patient, and, at times results in drop offs.

The COVID-19 pandemic caused a rapid increase in the uptake of telehealth globally. While remote care via telemedicine or other forms was seen as a contributing factor to health system resilience, there were also certain limitations noticed including internet infrastructure, digital literacy, problems related to explanation, and privacy related issues, among others. 

The potential and likelihood of remote care will remain high in the years to come but its use and uptake will depend on how these services are designed for the low-resource settings with different constraints in mind. One of the key opportunities lies in augmenting intermediaries with technologies and allow them to interface between the experts in the health system and the health seekers. Technology in health should seek to complement the in-person experience of health seekers, not aim to replace it.

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Provider profiles are meant to provide symmetric information about various health providers so that health seekers can make informed choices based on their goals and requirements. They include profiles of key healthcare providers in the community, including doctors, community health workers, pharmacists, volunteers, etc. Apart from essential details such as names and contact numbers, these profiles also include information such as what motivates them to do the work they do, etc.

How might we create processes to ensure certified doctors can be exhaustively enlisted with their complete profiles?

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The ARC research reinforced that for many people, health seeking was not a journey they undertook alone – rather, it included family, friends, and community members to help them along the way with healthcare decision-making, as well as resource sharing and more practical support to access care. However, these networks of care are often not taken into account when designing for wellness and care journeys of health seekers which tend to silo and separate them from their networks.

Formal care providers and naturally occurring networks of care should be enabled to form an integrated community of practice to enable seekers to experience effective and mutually-flourishing relationships with their care providers. For creating more resilient health systems, there should be an acknowledgement of these care networks that have the potential to serve as an invaluable resource to leverage in service of public health goals.

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Seeker-centric support structures provide customized support to active and potential health seekers and communities before, during, and after the disease diagnosis. These support tools include:

1. Physical booklets to support illness management: This is a non-digital intervention to include health seekers who are usually not tech-enabled. For example, for elder seekers not comfortable with technology, the booklet is a way to engage and involve them in their care journey, and keep track of their healthcare information including test results, prescriptions, progress reports, contact numbers, and FAQs. 

2. Digital resources for easy access and self-management: Such resources can be used at scale using digital mediums designed appropriately for less literate populations. These can be SMS-based reminders, voice-recorded messages, online and offline reminders and applications, among others. 

3. Facilitator-led shared spaces for health seekers: Such spaces aim to help seekers manage all the strands of their health by way of active support and sharing in smaller groups. These spaces are moderated by health actors or volunteers in-person, on a chat platform like WhatsApp, or in a hybrid setup. 

How might we include more public engagement and communication experts to create intentional resources for positive behavior change at the end mile?

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There are several factors that make it challenging for distant authority figures to effectively communicate health messages including trust, centralized communication, and contextualized messaging. Research shows two ways in which these challenges can be addressed by designing better channels for amplifying trusted sources. First, trusted and familiar sources are effective channels of messaging as these sources are generally trusted, understand the local context and are available for dialogue. Second, digital tools can effectively support health systems by facilitating immediate widespread distribution of information.

Channels of communication that include trusted and familiar sources should be used to amplify health messaging and seeking but with appropriate moderation and regulation.

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