Swasti | Self-Testing in Communities Playbook

FOREWORD

I write this amidst the global reckoning that 3.3 billion people who are least responsible for total emissions are bearing the greatest health impacts from climate change. We need a transformation of health systems to better prevent, predict, detect, and respond to disease outbreaks caused or worsened by climate change.

Against this backdrop, Self Testing is an increasingly valuable tool to assess personal health status, especially in the most marginalized communities that lack access to health systems. The introduction of Self Testing shifts the agency of personal health care to the hands of the people, while simultaneously reducing health system burden and strengthening community health systems.

During the COVID-19 pandemic, it was critical that Self Testing as a preventive measure was adapted in a widespread manner and not limited to a few. We, therefore set out to understand the usability, feasibility and affordability with regards to uptake of Self Testing.

Our learnings were manifold, and we are confident that Self Testing can be introduced successfully into communities with peer assistance. This journey has also shown us that when communities are armed with their own health information, they have the tools and confidence to not only tackle myths and misconceptions in their own groups, but also overcome hesitancy. The ability to conduct Self Testing in the privacy of their own space also increased comfort levels with and sustainable use of the approach.

This playbook is a result of an Action Research project undertaken by Swasti, The Health Catalyst - a public health non profit headquartered in Bengaluru, India with support from The Rockefeller Foundation. The playbook breaks down the “how to” along with relevant forms, formats and documentation, offers information and insights including community voices and stands in as a toolkit and resource guide for the introduction of self testing in community settings.

As we collectively gear up to protect the most marginalized from the greatest health impacts from climate change - including possible future pandemics – we hope this playbook will help in setting up the required systems - towards community systems strengthening for health systems strengthening.

Deepali Khanna
Vice President
Asia Regional Office, The Rockefeller Foundation

@deepalikhanna

The Power of the Collective

The introduction of self testing in communities was undertaken in Swasti’s flagship primary health program - Invest4Wellness (i4We) which partners community institutions to co-create and take to the doorstep of communities - primary health care services - tailored to their needs.

This made our work easier. We ran a study in parallel to understand the impact of the intervention and we found that in general, a large proportion of the participants were aware about the various aspects of COVID-19 self-testing. More than 3/4th of the respondents had heard about COVID-19 self-testing (79.2%) through the i4We wellness program with the community health workers being the primary source of information (76.2%) followed by the self-help group (SHG) meetings in the community (45%). 69% of the respondents were part of the self-testing initiative delivered by the i4We program, out of which almost 61% reported that the awareness generation by community health workers was most useful followed by training on doing self-testing (37.6%) which the community health workers provided.

Majority of the participants were aware of ‘when’ (86%) and ‘why’ (81%) to take the self-tests. Considerable proportion of the study population mentioned that they were aware of the duration of self-testing (73.6%) and knowledgeable about an incubation period that needs to be considered before taking the test once the symptoms develop (79.1%).

The in-depth interviews revealed similar findings with most participants being well informed of the ‘why, when and what’ of selftesting. Most of them reported that they would never be aware of availability of self-tests had it not been for the i4We initiative. The community-based program and community health workers were their primary source of information and training on the use of self-tests, with members in both locations appreciative of the hand-holding support and capacity building. From the interviews it was clear that the participants also knew where else to procure the test from, if it was not available through i4We.

To me, this means - the linkage with a primary health program and its frontline workers / community health workers - whether government or non governmental / community institution anchored - ensures that there is more comfort among community members with regard to self testing.

Neha Parikh
Portfolio Manager - Research
Swasti, The Health Catalyst

Progress

Plot: Problem Statement

The most marginalized and vulnerable communities were the worst hit during COVID-19 where their long standing struggles with access to health services such as testing became a chasm so large that it led to communities fearing testing and the possible consequences if they tested positive - ranging from being further pushed into poverty to becoming stigmatized. As the COVID-19 outbreak continued to impact the country, the need for dedicated, focused and sustained efforts to protect and serve the most vulnerable in India remained a priority.

Community Based Testing engages and screens vulnerable populations for COVID-19 risk through trusted community champions. It operates across the care continuum and creates service awareness and a database of individuals who are at risk of COVID-19 and need regular followup and support.

Those at high risk of COVID-19 were referred for testing through our mobile clinics and those at moderate risk and pre-existing conditions will have regular follow ups. We partner with local governments and NGOs to ensure referral to health or quarantine facilities for the COVID-19 positive and with individuals so they are empowered and cared for.

Our anti-stigma initiatives generate demand, de-stigmatize COVID and ensure early detection so that transmission can be curtailed efficiently.

Progress

What is a playbook?
A playbook includes “process workflows, standard operating procedures, and cultural values that shape a consistent response—the play.”

It borrows from some of the Aristotelian elements of the play -

Plot - The arrangement of events or incidents on the stage. The plot is composed of “clearly defined problems for characters to solve.”

Character - The agents of the plot. The People

Theme - The reason for the play. The Purpose.

3 of the 6 Aristotelian elements of the play

Over the month of April 2021, a deadly second wave of COVID-19 has

“When Lata* came with her mother to get her fever checked, I also tested her for Covid-19 using a self-testing kit. When the result came back positive, Sneha got very scared. But I counseled her and assured them that she would recover within a week. If we did not have access to self testing kits, we wouldn’t have been able to detect it early and it may have spread to other people. But I am happy that we were able to avoid it.”

Sharmila Nurse

“I had symptoms like cold, throat pain, and fever sensation, one fine day Meenakshi - our community health worker - came to my house for screening, after seeing my condition Meenakshi asked me to take a COVID test, after the test I tested positive, and nurse ask me to isolate and test my family members. After trying my husband and grandson also tested positive, self-test facility really helps our family with early detection, and we do not have interested to visit a government hospital for a COVID test because it is a very difficult waiting time and we are afraid of stories of COVID time.”

Rima

“When we did the test, we received clear instructions from the health worker. Initially I was a bit scared! Ma’am told us that we have to follow instructions, and not worry! So we followed instructions and completed the test.”

Shantalata*, Mohammadpur

“They will be scared that if we go there, the result will be positive and others will also know. But when they shared this with us we assured them that, nothing will happen to you, we can test at home only, result will be out in 15 minutes. If in case, you got the positive result, you can isolate at home only and stay away from others. How to stay and how to maintain the hygiene, we supported them in this way, they got little comfort feeling.”

Wellness Facilitator FGD, Kamakshipalya

“When my wellness facilitator taught me how to use a self-testing kit, I was very excited to also teach the same to my family members. In the last one year, whenever I have gotten down with fever and cold, I’ve tested myself for Covid-19 using the kit. Self-testing kits have made our lives so much easier. They are so easy to use and are the best way to protect ourselves and our families from Covid-19.”

- Ranju, Community Member, Mohammadpur

Female member, Mohammadpur

“They were scared that if the result will be positive, others will know. But when they shared this with us we assured them that, they shouldn’t fear as they can test at home only and the result will be out in 15 minutes. If in case, the result is positive, they can isolate at home only and stay away from others. How to stay and how to maintain the hygiene, we supported them with it and it gave them a comforted feeling.”

Wellness Facilitator FGD, Kamakshipalya

“If we have cold, cough or fever we do the self test. We do it on our own. And we are ready to take the decision without any fear. Our group has given us the courage, they have motivated us saying, there is no problem. If anything happens we will all be there together. Now we are ready to take medicine. We are ready to take medicines and to tell ten more people about this.”

Female Member, Bangalore

“When they go to the doctor, they would never touch them. They will just get the test results, but they would not get any support. Here they get more support - support from nurse, support from doctor and the wellness facilitator. We will check your condition every morning and evening. One more thing is, it will be confidential. When we explain all these to them, a trust will be built and they start accepting this openly.”

Wellness Facilitator FGD, Kamakshipalya

The Problem

As COVID-19 has struck low-income urban communities, they face a range of problems that hinder access and utilization of COVID-19 services from prevention to treatment.

Testing in the community, especially within hard to reach and extremely vulnerable populations, remains difficult. Limited access to testing leads to delayed identification of COVID-19, leading to both poor health outcomes for the infected individual and increased transmission in the community. Furthermore, having a test alone is not enough- unless testing is integrated with referral systems for compassionate care, home isolation, institutional quarantine and hospitalization where needed, healthcare will remain fragmented and inefficient and the likelihood of an explosive epidemic increases. Effective testing is also constrained by the fact that there is a palpable fear of getting tested, especially amongst vulnerable communities, due to:

Lack of trust in institutional quarantine and fear of forced institutional quarantine away from their communities
Loss of livelihood and ability to survive in quarantine
Stigma from the community and care providers

In addition the challenges of COVID-19 testing in communities, ensuring that individuals who are COVID-19 positive are able and willing to isolate and receive care poses another problem. For those from these communities who do test positive, home quarantine is virtually impossible as most of them live in houses with a single room and/or lack of access to water and bathing facilities within the house. With hospitals across the country overwhelmed and the pressure showing no sign of reducing amidst the second wave - there is an urgent need for interventions to serve COVID positive patients from vulnerable communities in order to ensure these patients are cared for and to reduce the burden on the healthcare system.

So far, the inability to control spread of the virus has led to a massive burden on the health system, leading to loss of life. The shortage of healthcare professionals and supplies both contribute to the inability to cope with the influx of cases. Many cases arrive late at hospitals, already in need of critical care that could be avoided by early intervention. The number of patients with severe cases continues to rise, and hospitals do not have enough ICU beds in some cases or even simple oxygen support therapy and equipment to manage the demand. In order to address this challenge, there is a need for innovative solutions that can support the healthcare system.

Agency and Self Testing

The most poor and marginalized communities often struggle to navigate the formal healthcare system perceiving it with a fair amount of fear, trepidation and labeling it unfriendly, or costly, or both. The systems and processes of health care service delivery often means loss of a days’ wages for the poor in attempting to navigate the same. On the other hand, health is not a priority for the poor, unless it affects their work, and generally only symptomatic relief is sought.

This results in repeat episodes of preventable illness and also drug resistance to treatment. The poor lose one to two months of productive time a year due to illness in their family, and nearly 50 60 percent live with some form of undiagnosed illness and die earlier than those economically better off. In India alone, about 50-60 million people in the last decade have been pushed to the brink of poverty because of health-related expenditures.

The central problem is often agency of the human being over their own health and access to testing. Self-testing is bringing that agency back to the people to a large extent where they can test themselves in the safety of their home - or wherever they feel safe. It does not require a long turn around time for receiving the test result and they can then work with a community health worker to navigate their next steps around the health concern. It also takes away the fear of possible consequences of a positive result - instead ensuring that with the test in their hands and them in their own safe space - they take the agency and responsibility of the right next steps.

In the context of a situation like COVID-19, self-testing allows people to decide whether to go out or self-isolate at home or seek care. The term “going out” would include work, socializing, shopping, and eating out. The decision making is no longer a diktat but a conclusion arrived at by oneself based on ones’ own self testing.

Adjusting intensity of pushing for Community Based Testing

When there are outbreaks in the neighbouring areas or in the city

High intensity of encouraging CBT - with intentional programming on ground to ensure more and more people have occasion and opportunity to self test - including rolling out door to door campaigns as required

When there are no outbreaks / an epidemic has slowed

Towards the tail end of the first wave of COVID-19 in India, we experienced the incredible usefulness of setting up similar programs with communities of M-East ward, in one of the most socio-economically disadvantaged areas in Mumbai. With the program, we saw that the community there had access to antigen and PCR testing close to their homes and with quick turnaround times, at a time where the rest of the city was struggling to get tested.

Pandemic Preparedness & Self Testing in Communities

These systems and habits are strongly systems oriented yet agile - where it will remain in place and continue to support people who could come back positive after testing and it can also roll out a a higher level of response in case of rise in cases, ensuring that communities are better prepared as more waves of the pandemic arrive. We also built in surge capacity for times when infections increase and taking a surveillance approach when there is a lull in the outbreak.

Depending on the geography and the outbreak, repeat antigen testing in highly exposed individuals such as community workers, factories, nearby construction sites could be set up to identify outbreaks early.

Purpose and Objective

Stronger Together

The Self-Testing in Communities Playbook offers guidance to help communities explore the suitable options of self testing for vulnerable populations, insights on what works and what does not and communication strategies to address myths and misconceptions. The document outlines the steps required for incorporating self-testing activities that can be undertaken for smooth planning and rolling out of self-testing in communities.

In the playbook, you will find:

Set of activities to integrate self-testing as an activity in the community
Summary checklist
Team role matrix
Tips and tricks

The playbook divides the entire process into 3 Acts, which are as follows:

Act 1
Scene 1 : Planning phase
Scene 2 : Pre-roll out phase
Act 2 : Roll out of self-testing phase
Act 3 : Post self-testing phas

Who are the people?

Program Manager

Role:

Develop the testing strategy for the communities based on the risk assessment and information gathered from communities
Orchestrate training and orientation for the clinical and non-clinical team involved in testing
Facilitate and ensure availability of resources required for testing

What does the Program Manager need to know?

Information regarding the community spread of COVID
Access to and information on referrals and linkages to care
Technical support for the team of healthcare workers

Field Notes : On the role of the Program Manager

The Program Manager could be the manager of the community health workers themself.

So either they manage the program of introducing and sustaining self testing in communities or they’re the supervisor of the community health workers or working at a community health centre.

This individual is a central focal point who can manage the administrative bit in the sense of determining :

How are the tests getting distributed?
Where are the tests being conducted?
Who are the people who are positive and need help?
Who are the people who are concerned about their status due to exposure but are testing negative? Do they need help with a repeat test?

And manage administrative responsibilities such as maintaining inventory of tests, understanding insights around self testing behaviour and addressing any hurdles to uptake, making sure that social behaviour change communication is appropriate.

Community Health Workers

Who are they:Community Members

Community Health Workers are community members who take lead in the program and train to become frontline workers anchoring health and wellbeing initiatives in the community, engaging with their community to facilitate their wellbeing journey - as individuals and families.

They may be part of government programs or programs run by community institutions or non governmental institutions.

Community Health Workers are truly at the frontlines where they implement projects as per project design and have powerful valuable insights for behaviour change communication and trainings for communities to lead healthier lives. They are often tasked with review and pre-test of programs, documentation of the feedback using tools as appropriate, and are tasked to incorporate changes in order to respond to community urgencies and actively scale-up programs - ranging from immunization to mobilising for testing for communicable and non communicable diseases - based on community requirements. They often co-design and develop appropriate behaviour change display and training aids/ props that are cultural and language sensitive.

What do the Community Health Workers need to know?

How to demonstrate self testing efficiently and help community members learn the same
Importance of providing respectful instructions, informations and link to care
Digital literacy for those doing data entry
Understand how to escalate any concerns including quality issues with the kit to the clinical team

The following functions are imperative for the community health workers to carry out in this context:

Assuage all doubts with the help of the clinical team
Arrange for self test kits from the clinical team / program manager
Be prepared to demonstrate and help
Support data entry on the apps

Community members mentioned that the trust in the community health worker was the key factor that motivated them to undergo self-testing resulting in was their trust in the health workers and positive experiences from the program. They felt that the unwavering support offered by the health workers helped them overcome the initial fear and hesitancy from their family which prevented them from accessing these tests. Continuous sensitization campaigns and mass capacity building sessions conducted by the program induced a mindset change among the larger community thereby increasing the overall acceptance and willingness to test among communities.

Clinical Team

What does the Clinical Team need to know?

It is important to have sensitisation sessions on the importance of providing respectful care and its impact among vulnerable populations. At the outset it is important for the clinical team to skip any assumptions that the community has all the information or would be able to find it by themselves. Communities, particularly marginalized and vulnerable communities, may have poor experiences interacting with health systems historically and specific health-related questions that, clinical teams should be briefed on answering most sensitively.

During COVID many people did not access general care, even when they needed it, due to health systems being overloaded. So if testing initiatives for vulnerable populations are implemented during a pandemic, clinical teams may also use these occasions to address the communities’ general clinical concerns.

The following functions are imperative for the trained clinical team to carry out in this context:

Provide pre- and post-counsel on what to expect.
Actively assist the community members in conducting the self-test
Ask if there are any questions and respectfully answer any questions or concerns, however basic they may seem.
Help community members read the test results and address the concerns of treatment and stigma if tested positive while deploying the protocol on positive test results.
Request community members to repeat the test the next day if they test negative and are experiencing symptoms.
Explain the importance of attending routine testing program when selected for random testing for those who test negative.

Places

Accessible | Affordable | Available

How to choose the right place to set up health worker-assisted self-testing?

In partnership with peers, choose the location for peer-assisted self-testing that is most convenient and safe for them. Identify a location to conduct testing in the community. This could be a at wellness centers, during house-to-house visits, or during NCD camps. Following are some examples of places where you can conduct testing for your community members:

Homes of the individuals
Clinic or Medical room
Isolation room
Self-help group meetings
Dedicated kiosks set up at NCD camps
Community events
At the community member’s workplace (if it allows for privacy)
Outside the workplace
Open space with a shelter/roof
Kiosks set up outside or at the entrance

If there are multiple sites/locations within the community ensure that all the sites meet the following criteria.

The testing location should be:

Well ventilated - to prevent infection among people testing together
Well lit - to ensure that the test is being conducted and interpreted correctly
Private - to protect the worker’s privacy while performing the test
Accessible - to ensure that all workers will be accessible to access and perform the test quickly to minimise disruption to production
Well equipped - with a flat and stable desk or table to perform the test, chairs without armrests for the community members, and large bins with biohazard bags to dispose of the used test kits

The place should also have an accessible drinking water facility, medical care, privacy and washroom. Ensure that the self-testing space is accessible for people with disabilities. If that is not possible, alternative arrangements need to be made - this may involve discussing with the Medical Officer at the vaccination centre to explore alternatives such as Mobile Vans.