It has been almost three years since Savitha, who identified herself by first name only, has been working as a community health worker (CHW) in the southern city of Mysuru in Karnataka, India. The 37-year-old commerce graduate, one among 19 others in Mysuru’s Kumbarakoppalu, a potters’ colony, is a part of a project to tackle diabetes and hypertension in an urban area by putting the patient community at the centre of the whole initiative.
Started in 2017, the pilot initiative — ‘Non-communicable diseases (NCDs) programme for hypertension and diabetes at primary healthcare level’ — is a collaboration between the Karnataka government’s health and family welfare department, Mysuru city corporation, US-based Medtronic Foundation, Landmark Group (corporate social responsibility wing) and Karnataka Health Promotion Trust (KHPT), a not-for-profit charitable entity.
Savitha told Happiest Health she was “slightly apprehensive” before starting the job, which pays her Rs 7,000 every month. However, the patient-centric care training imparted by the KHPT gave her the confidence to accept the work. “To help people living with diabetes and hypertension motivated me further,” she said.
Today, 80 people living with diabetes and hypertension from Kumbarakoppalu are under Savitha’s care. A similar number of people is under the care of her colleagues.
CHWs mantra: patient-centric approach
Over the years, Savitha and her colleagues such as Geetha (37) and Pavitra (32) — both identified themselves by their first names only and have similar work experience and responsibilities as Savitha — enrolled patients, did their risk and vulnerability assessment, designed a patient-centric plan and also followed up with patients once in three months for clinic visits to the Urban Primary Health Centre (UPHC) in Kumbarakoppalu.
The UPHC is the hospital that is the first point of contact for people in Kumbarakoppalu, which has a population of 58,000. The city of Mysuru has a population of 920,550 people (as per the Census 2011).
In 2017, the KHPT screened 32,000 people (all above 18 years) from Kumbarakoppalu. The results showed that 3,100 of them were either diabetic (32 per cent) or hypertensive (34 per cent) or had both diabetes and hypertension (34 per cent). However, out of these, only 1,800 people become part of the pilot initiative on community-based approach to ensure continuum of care for diabetes and hypertension.
Since it’s an urban area, a sizeable section was part of the floating population and could not join the initiative, said KHPT officials at the project in Kumbarakoppalu.
“We visit homes of patients regularly and conduct behaviour-change communication activities,” said Geetha, who has finished her schooling. “We also check their blood pressure and body mass index (BMI). Once in three months, we ensure that patients visit the UPHC for check-ups.”
Apart from the routine HbA1c (average blood glucose [sugar] levels for the last two to three months) and hypertension test, complication detection tests such as cholesterol, renal function test (kidney test), ECG and diabetic retinopathy were conducted for the patients.
In case patients require advanced services to higher referral centres — for health, counselling and non-health issues — it is the CHWs who refer them to these institutions. They also link the needy patients to social entitlements and regularly mobilize patients for community support group meetings. All CHWs are selected from the local community since they know the people, languages, traditions and places well.
An app to aid people
“It is heartening to see people living with diabetes and hypertension under our care are stable,” said Geetha.
Pavitra, an arts graduate, said that the CHWs started their work in 2019, before the coronavirus pandemic, and continued working even during the lockdowns.
Thanks to technology, the CHWs managed to keep a constant track of the health status of people living with diabetes and hypertension and their hospital visits. Regular interaction between the patients and CHWs continued over phone after in-person meetings came to a halt during the peak of pandemic.
The KHPT also designed an app for CHWs. All CHWs use the app to capture all critical data of the patients. The app is useful for risk and vulnerability assessment, robust outreach, behaviour change communication, mental health screening and mobilisation activities.
“The app is easy to use,” Savitha said. “We regularly update the health details of the patients in the app. Doctor’s consultation and treatment of the patients depend on the medical record stored in the app.”
Talking about the app, Poornima BS, a KHPT official, told Happiest Health that it is called CHW application. “Four types of assessments of patients are done using the app — demographic, socio-economic, medical and psychological,” she said. “The app also serves as a job aid that helps in planning, outreach and providing customized behaviour change communication solutions (based on vulnerability assessment and metabolic control).
“It also acts as a monitoring tool that helps in providing customized counselling based on the vulnerability assessment of the patients. The work is in progress to make this a two-way communicative app to be accessed by the patients too.”
Burden of NCDs in India, Karnataka and Mysuru
According to the World Health Organization (WHO)’s ‘Global status report on NCDs, 2014’, approximately 5.8 million people die from NCDs (heart and lung diseases, stroke, cancer and diabetes) every year in India.
NCDs are lifestyle diseases — resulting from sedentary way of living and wrong dietary choices, say experts. NCDs, which are usually considered to be ‘rich man’s diseases’, afflict poor and lower income group too — as figures from Mysuru’s Kumbarakoppalu show.
The WHO said the NCD burden in India will significantly worsen in the future. It is estimated that the number of people with diabetes will increase to 123.5 million by 2040.
The probability of an Indian in the 30-70 age group dying from the four main NCDs — cardiovascular diseases (coronary heart disease, stroke and hypertension), diabetes, cancer and chronic respiratory disease — is about 26 per cent.
Karnataka also shares a huge burden of NCDs. The four major NCDs constitute around 25 per cent of all disease burden among the 15-39 age group population in the state. The NCDs burden among Karnataka residents above 40 years is 70 per cent.
In order to take control of the situation, the Ministry of Health and Family Welfare, India, launched the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke (NPCDCS) in 2008. The objectives of NPCDCS are to prevent and control common NCDs through behaviour and lifestyle changes, provide early diagnosis and management of common NCDs, build capacity at various levels of health care for prevention, diagnosis and treatment of common NCDs, train human resources within the public health set-up to cope with the increasing burden of NCDs and to establish and develop capacity for palliative and rehabilitative care.
Mysuru is one of the 20-plus tier-two cities in India witnessing an increased burden of NCDs. Some of the other urban centres are Allahabad, Patna, Agra, Meerut, Gurgaon and Srinagar. As per the district level health survey-4 2012-2013, 8.1 per cent of Mysuru district’s population was living with cardiovascular conditions, 12.7 per cent had diabetes and 25.6 per cent had hypertension.
Living with hypertension and diabetes
Umesh, 40, who identified himself by first name only, said that earlier his sugar level went up to 250 mg/dL from 130mg/dL whenever he would get stressed.
Sommaiya (in his early 60s), a person with hypertension, said when he was diagnosed with hypertension, he tried to bring it under control. But he was unsuccessful.
Mahadevamma (62, with diabetes) said that her only concern was why diabetes was affecting her so badly.
Things started changing for Umesh, Sommaiya and Mahadevamma — all residents of Kumbarakoppalu — after they joined the pilot initiative on NCD. “Ashwini, the CHW who takes care of my health, visits my home on a regular basis,” said Sommaiya. “She gives me good health tips. She checks my blood pressure levels and enters them in the app. Because of Ashwini’s advice, I started walking. I go for a 3km walk in the mornings and exercise daily. Because of exercise and walking, I feel flexible, and I can do my regular chores.”
The project has created community support groups, which are informal platforms where patients and caregivers come together and offer emotional support to each other.
“Dealing with diabetes and hypertension is often a tedious, lonely and stigmatizing experience,” said Vidyacharan Malve, monitoring and evolution manager, KHPT. “We have developed community advocates among patients and have trained and empowered them to be facilitators and engine drivers at the local level. The community advocates inspire other patients with their stories and motivate them to adopt healthy behaviours and positive attitude.”
While making an assessment on the NCD project, Dr Ramya SR, chief medical officer, UPHC, Kumbarakoppalu, said that the locality consisted of people mostly belonging to low-income and schedule caste groups.
“The project on diabetes and hypertension has brought a change among the population,” she said. “People have become aware of leading a healthy life. Now, I see more people coming on a regular basis to the UPHC. They do their consultation and treatment without missing.”
Regular screening and awareness activities have led to an increase in footfall at the UPHC — from 120 people in 2017 to 2,300 in 2021, as per the Kumbarakoppalu UPHC-OPD footfall register/programme monitoring data.
“Since diabetes and hypertension are lifestyle diseases, patients require continuous care and management of their health,” Dr Ramya. “In India, there is very little investment from the public health services for NCD care. The Mysuru model has the potential to be expanded and replicated in other parts of the country. For most middle-income and low-income groups, NCDs are not simply health issues but they also bring huge financial burden too. The NCDs lead to fall in socio-economic conditions of the affected persons and their families.”
Learnings
The KHPT officials told Happiest Health that they learnt a lot while initiating and implementing the Mysuru project. Some of the key learnings are:
- To run a proper NCD care service, capacity building is needed both at the patient level and facility level to help meet both demand and supply
- Patients should be given priority based on their risk and vulnerability factors to help plan proper outreach and delivery services
- To help patients develop better metabolic regulation, a personalized care model and customized behaviour change communication (BCC) tools and strategies are needed for microplanning
- Addressing mental health is equally important in the management of NCDs.
