Identifying Key Issues §
At first it was swollen here (on the neck). I didn't understand what it was. I didn't care so much. It had been about two months. Everyone said to see a doctor. I would not see a doctor considering the price of the doctor's visiting fee and medicine. My husband also said let's go to the doctor and the money can be managed. I heard from many people that it can cause cancer in the throat. After hearing that, I got a little scared, so I thought I should see a doctor.
A young mother from Dhaka, Bangladesh who was diagnosed with TB
One of the key issues that Project ARC identified was that health seekers, at times, delay their care, complicating their health journeys. Two factors that contribute to this reality are:
Health seekers are often unaware of how seriously they should take some symptoms and are not empowered to assess the complications that can arise from delayed care.
Health seekers are often unaware of their options to seek care.
"So many people have given me advice regarding the treatment of my second son; I have really become confused about what to do. By the end, I decided that I will just follow what I think is right, and not what others recommend."
A mother from Bogura, Bangladesh
Reaching out to Seekers §
Seekers will often need knowledge and support to make the right decisions around the when and where of care seeking. Community Health Workers we interviewed mentioned the need to handhold health seekers in identifying the right time to seek care and in visiting the right care facilities that suit their needs.
We help pregnant women go to the hospital… When they are in a serious condition, we make them communicate with our doctors and advise them to go to the hospital… We measure their weight, blood pressure, hemoglobin, blood sugar etc. If the calcium levels and iron levels are low, we give them supplements at a cost. During the first wave, we got instructions not to go to any houses and so instead we told them to eat nutritious food, and also advised them to measure their blood pressure and weight. We told them to go to nearby healthcare organizations.
From a focused group discussion of BRAC community health workers in Bogura, Bangladesh
In most cases this kind of outreach is limited to specific health system concerns such as Maternal, Newborn and Child Health. In the future this can be broadened to a general approach with digital technologies playing a crucial role in driving outreach, especially to vulnerable populations.
A study (Diaz, 2022) conducted with underserved communities in a racially and ethnically diverse neighborhood in Northern Manhattan, USA, assessed the uptake of digital intervention vis-a-vis direct outreach via community-based organizations (CBO) to encourage COVID-19 vaccination uptake. The results showed a substantially higher vaccine uptake with CBO outreach than when self scheduled digitally. These findings suggest that direct outreach from trusted community resources can address challenges navigating self-scheduling technology and potentially mitigate distrust of COVID-19 vaccination in Hispanic and Black communities.1
Driving Seeker’s Participation in their Own Care §
“Setting expectations, pointing out availability and being present as promised helps make us reliable. You have to say to them, ‘Come in these days. I'll be in the clinic. I will be here on Sunday, Wednesday, and Saturday. You have to come in those days. It's your duty to sit in the community clinic. You have access to the right medicines and we can conduct a routine check-up here.”
Community health worker in Bangladesh
The receptionists at the BRAC Maternity center ask everyone if they got a thorough check-up once till now or not. If not, they urged them to see a doctor to see if the mother’s health is in a good condition. "One woman in her 5th month was unwilling but we explained to her the benefits of visiting a doctor. You can't wait till the last minute to know what's wrong, God forbid.” The woman was convinced and agreed to meet with the doctor."
Maternity Center in Bangladesh
The World Health Organization (WHO) promotes the use of self-care to enable individuals to promote their own health, recognizing the agency of individuals to help manage their own care outside or partially outside of the formal health system2.
Participants’ stories in ARC revealed that too often there are gaps in participants’ understanding of their diagnosis, care options and treatment regimens. While part of this can be addressed by the health system reaching out to seekers and helping them make right decisions, this challenge also points to the need for designing for proactive engagement from health seekers. This will not only allow them to better grasp their health care options but also allow health systems to create more customized care paths to meet individual requirements.
A growing body of evidence suggests that patient engagement can lead to better health outcomes, contribute to improvements in quality and patient safety, and help control health care costs, with an increasing recognition that patients are at the core of the health system. Not just patient, but family-centered care and shared decision-making, both reflect and accelerate the shifting roles of patients and families in health care as they become more active, informed, and influential. A multidimensional framework by Carman et al. identifies three critical aspects of patient and family engagement, based on their study of existing literature. These include (1) engagement activities that range along a continuum from consultation to partnership and shared leadership, (2) engagements that occur at different levels which are not just confined to individual health behavior but also span across organizational design, governance, and in policy-making, and finally (3) multiple factors that affect the willingness and ability of patients to engage. This model further explores the implications for the development of interventions and policies that support patient engagement. While patient engagement is not a quick fix, it provides new opportunities vis-a-vis the traditional models of patients and clinicians that are still operating in an older paradigm of a paternalistic clinician and system. As the field of patient engagement continues to evolve, the aforementioned model corroborates previous research to show a way forward for designers of health systems.3
It is important to emphasize that this is not a provocation to shift the care burden from the health system to the health seeker. People with different backgrounds, life situations, and physical and mental conditions will have different levels of motivation and ability to partake in self-care4. Instead this is about increasing access and engagement with the health system. In the context of digital health, innovations to promote proactive health seeker engagement such as health information sites, two-way messaging, and self-tracking devices can be used as ways to bridge gaps between clinicians and patients, as they enable patients to become more knowledgeable about their own treatment and improve their participation and self-management, ultimately empowering the patients.
Research studies such as this one from 2019 (Andersen et al, 2019) and this one from 2011 (Dedding et al, 2011) in OECD countries have highlighted the need for patient-centered design in e‑health solutions that cater to an increasing patient demand for higher quality and more personalized care. While the potential benefits of personalized self-care solutions notably include positive care transformation, increased access and engagement, better quality, and lower cost, there are challenges that researchers and designers should also consider while designing for such services. Considerations for the latter include clinical efficacy, cost-effectiveness, and adverse effects on the patient-provider relationship, among others. Research on patient-provider relationship suggests a marked difference between the way clinicians think about disease and the way patients experience their own illness, relevant especially in cases of chronic conditions, which further feeds into the design of such e‑health solutions.5
How might we use digital technologies as reach multipliers to extend and build on existing outreach mechanisms such as community health workers?
How might we proactively inform and educate future health seekers, especially vulnerable ones, of their care options before they need the care?
How might we enable and regulate peer based learning among health seekers suffering chronic health conditions?
How might we support and empower willing health seekers to become active stakeholders in their treatment?