A Lifetime of 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.

The Health Kiosk concept offers a leap in convenience for individuals needing trusted over-the-counter prevention items and rapid home diagnostic kits typically only offered in public health facilities and pharmacies. By tailoring a kiosk’s product mix to match the needs of a specific audience and placing it where these people are naturally found, we better align distribution with desire.

We’ve envisioned FlyTeens as high school kiosk offering home tests for COVID, HIV, STDs, pregnancy, glucose and blood type and products like condoms, lube, morning-after pills and study/​concentration supplements; a product mix addressing common health needs of students. For confidentiality, transactions take place behind a curtain. A discreet monitor and keyboard connects teen clients to timely expert advice or begins an anonymous crisis text counselling service which can be continued via their cellphone.

As digital ID and mobile technology evolves, kiosks could be ramped up to dispense scripts for individual patient needs. 

How might we partner with mobile phone network providers to embrace the business opportunity of delivering services through kiosks?

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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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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.

Mental health is an overwhelming support burden for systems with limited psychologist and psychiatrist resources. The FlyTeens crisis text line connects young adult clients with trained community volunteers via text messaging with technology that protects the confidentiality of both parties. 

FlyTeens is the designed to provide crisis support for teens who suddenly find themselves overwhelmed and unable to cope with their immediate reality (eg: a teen pregnancy). The technology behind FlyTeens connects a community volunteer who understands the social context of teen emergencies, is fluent in the client’s language and can immediately diffuse lack of trust issues through the anonymity of the platform. 

Volunteers are trained to apply empathy and respectful listening via texting with the goal of navigating young people to appropriate and available health system care. Teens can use the line as often as needed, but each conversation would be with a different volunteer as the design of this line is to provide crisis support, not long-term counselling care.

How might we gather and share successful mental health pilot programme experiences with audiences outside of academia?

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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.

As we continue to evolve community care to reach beyond a facility-based model, ARC’s work suggests that priority should be given to those elements of care community members feel are missing. The lifetime burden of adherence for NCD patients and providing patient support to overcome a community’s stigma and risk perceptions of communicable diseases are two key gaps where an innovative Community Health Coach could be a new solution offering empathetic care. 

Our vision for Coaches differs from traditional peer educators. Coaches offer specialized, expert support because they are first and foremost patients themselves, and so bring a ​“been there done this” credibility and empathy to the relationship. 

Coaches are designed and funded as a community resource independent from the health care system with skills that compliment a community’s public health priorities. This insulates Coaches from a myriad of government/​citizen factors that influence health system mistrust.

Coaches provide a bridge between interpersonal/inter-community issues and the public health care system, with their priority always the community member’s care. A Coach’s priority is the wellbeing of his ​“player”, and Coach training and focus is on improving the health and life of the individual under tutelage. 

It’s critical that Coachs don’t become victims of ​“system mission creep”, compromising their credibility and ability to impact on their primary health issue by spreading their attention to areas where they have no personal experience.

Coaches become partners for local healthcare facilities, offering health seekers the emotional and community support that overburdened professionals wish to but cannot.

How might we Coaches best partner with existing community public health facilities and staff?

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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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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.

Digitizing health records for security and rapid access across facilities can address many friction points that frustrate seekers and health professionals. The MyHealth App is a tool deployed and managed by Ministries and governments to reframe the seeker as a key participant in their own healthcare. 

MyHealth is designed to give secure access of key records to the individual patient. This allows them to be a partner in their own care by giving them a monitor of their own key health data via this next generation cloud-based app. For the system, digitized data becomes available for diagnostic leaps in diagnosis and patient support via advances in AI. 

In the case of Sipho, MyHealth gives him a tool to address the stigma he feels being an HIV patient by confidently and confidentially sharing his viral load test history with Olwethu.

Its envisioned that MyHealth links together a patient’s health records across facilities, regions and life stages, giving health car professionals a fuller picture of a health seeker’s full health story. This reduces the need for taking history in each visit, greatly improving diagnosis and treatment efficiency while delivering a more empathetic engagement for the patient. 

How might we design apps to be natural extensions of in-person health care engagements in public health facilities, delivering additional value to clients?

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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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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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Seekers frequently complained about frictions in their engagements with public health care facilities when their care needs are specialized. Unnecessary queues for admin, challenges that specialists would be available on the day of their appointments, and frustrations that concerns and questions weren’t able to be addressed due to engagement time constraints were common issues.

Offering better outcomes, treatment efficiency and seeker care satisfaction at an affordable cost makes specialization centers an attractive option for seekers in the communities we studied. Seekers believe it is quite logical to assume that a Dr who performs a procedure 2,000 times a year will be more proficient and efficient than one who performs the same procedure 100 times. Existing examples in eye, cancer and diabetes care show the viability and feasibility of designing and delivering a superior engagement for a specialized treatment area; an upgraded product which a growing number of public health clients will choose to pay for.

Olwethu’s story highlights the impact an affordable, community-based maternity-only clinic (Unjani Maternity) can have with both seeker and those close to her.

How might we scale affordable specialised care at the regional and global level?

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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.

ARC’s community engagements revealed the extent to which individual health seekers are supported by a close, trusted network of caregivers. Several innovations we found focus on more conveniently linking treatment and prescriptions to seekers though home delivery or technology-empowered lock boxes located in high traffic areas. 

We envision complimenting investments in new technologies needed to geolocate and deliver to patients in densely urban or extremely rural homes (that typically don’t have street addresses nor sometimes even access roads) and the construction of banks of secure lockers in shopping malls via a simple system that empowers those natural health seeker networks of care.

My Trusted Community allows any public health patient to securely link a trusted individual into their care network, giving this person permission to obtain and deliver prescriptions to them. The seeker and their care network are securely identified via a biometric ID tool. The seeker has full control of who they allow in their circle of care; family member, neighbor, friend, community health worker. All can be formally linked via the My Trusted Community system and are formally embraced by the health care system as a valuable links in the chain of care. 

How might we redesign the interface between health care policy-makers, regulators and innovators to accelerate impact?

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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.

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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Travel to and from facilities is a point of friction for many health seekers. ARC’s strands of health highlight that this can put a financial and social strain on seekers and their care networks. 

A number of novel, community-based initiatives that address the overall health burden of transport emerged in the course ARC’s work. One opportunity envisioned through Olwethu’s story is to connect advances in technology and the private sector’s growing commitment to shared value actions to complete a missing link in the care delivery value chain.

Community Health Express would be embedded into the MomConnect app, linking the patient, community health care worker, care facility (even if it is a low-cost private facility like Unjani Maternity) and a community/​corporate co-sponsored transport service. 

When Olwethu’s water breaks, one button connects all services. Community Health Express alerts the community health worker and Unjani Maternity center (working together they coordinate any immediate medical issues as Olwethu and her mom embark on the journey to the facility) and hails the Health Express transport taxi for the trip to Unjani. We envision this vehicle as a collaborative partnership between the community (who provides a trained volunteer driver and maintenance funding) and the corporate sponsor (who provides the vehicle and operating costs). The MomConnect App is automatically triggered to add new features relevant to Olwethu (eg: breastfeeding tips, Baby FAQ’s, New Mom’s Community Chatroom, Return to Birth Control).

All connected parties benefit from being in an integrated communications loop.

How might we apply HCD with funders to redesign funding based on a lifetime of care mindset and model?

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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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Scaling the delivery of tailored health care education is one of the primary investment drivers for digital telehealth. Getting the recipe right for creating healthier behaviours as a result of those engagements is proving trickier. MomConnect is a good example of an existing and evolving mobile app that embraces the need for both physical and digital engagement to achieve results.

MomConnect is introduced and often installed by the consulting maternal nurse who can explain the benefits as well as the interaction opportunities to pregnant patients. MomConnect allows a national Dept of Health to register a pregnancy linked to a facility and to send stage based, personalized messages to the expecting Mom via WhatsApp or SMS texts. 

As smartphones become more pervasive, we’ve envisioned MomConnect of the future to build on our project’s design considerations. For example, linking the father and other key family members in tracking the development of the fetus helps to foster integrated communities which are motivated to support future births. Offering tools to help mothers and health care professionals co-create birth plans or to integrate best practice nutrition tracking and nudging capabilities enhances how information is made both scalable and specifically relevant in the context of a mother’s life.

How might we apply advances in AI and algorithm development to integrate micro-tailoring into the value proposition of tele-health and tele-care offerings?

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