Cover story

Splitting effect

The ‘distributed care’ project in Assam has the potential to provide a blueprint for patient-centric cancer care and treatment across the country

What’s the optimum way to help India battle the cancer beast that is upon it? An unfolding effort in Assam — part standard procedure, part improvisation, part experiment — is providing insights and answers.

Preventive and promotive, rather than curative, are the watchwords in the initiative. It concentrates on screening surveys and awareness programmes at the community level, while developing a three-tiered ‘distributed care’ model aimed at enabling patients to get cancer treatment closer to home.

Currently in its first phase, the programme operates under the Assam Cancer Care Foundation (ACCF), set up in December 2017 as a collaborative venture between the Assam Government and the Tata Trusts. Extensive community outreach projects have been seeded in five districts of the state through camps in villages and 10 centres.

Assam is the first and most substantial component of the initiative, which is at various stages of replication in five other states of India: Maharashtra, Andhra Pradesh, Jharkhand, Odisha and Karnataka. Besides the respective state governments, a host of NGOs and other partners are involved in the collective endeavour.

Assam is an appropriate setting for the programme. It bears an annual load of more than 30,000 cancer cases, 70% of them at an advanced stage. Early detection is the key to changing this grim statistic, which explains the stress on screening — not just for cancer but other conditions as well — and awareness building.

Detect to protect

“We want to make people and communities aware of the early symptoms of cancer, and we want to inform them about how to reduce the risk of getting the disease,” says Sanjiv Chopra, a senior consultant with the Trusts. “We want to ‘downstage’ the cancer, catch it at stages 1 and 2, when it is curable. That can happen only through a massive campaign of prevention and promotion.”

Dr Chopra bemoans the elevated status in cancer care of the curative, at the expense of all else. “We have to alter our strategies,” he says. “We have to reach out to the public in the areas where they live and make them knowledgeable enough to catch cancer at an early stage and report it.” The focus in Assam is on precisely that and the logic of it is sturdy.

A child at an awareness promotion programme in Guwahati

“India has to cope with more than 1.1 million new cancer cases every year and a huge number of these patients go untreated,” adds Dr Chopra. “Cancer incidence keeps increasing and we keep chasing after treatment. It’s a vicious cycle and we will always fall short.” Patient-centric cancer care, the principal objective of the Assam initiative, demanded a different approach.

The community camps and the 10 centres in the programme help cover most of Assam, the idea being that no person need travel more than three hours to reach the nearest screening station or treatment facility. For the screening itself, the central government’s National Noncommunicable Disease Monitoring Survey — supported with resources by the Trusts — has also come in handy.

Cancer is but one of a variety of diseases the Survey looks to reveal, and this is a help for the programme. “Unless you do an outreach programme, nobody will come to you,” says Dr Chopra. “People get intimidated; they don’t want to step into a hospital for a cancer checkup. This is a big barrier to overcome.”

Going local

Local Assamese health workers have been hired and trained to ensure better community participation. The results have been along expected lines. “People from the community becoming responsible for the health of that particular community — it has been tried successfully in countries like the Philippines, Ethiopia and Thailand,” says Dr Chopra. “These workers find it easier to figure out who is unwell and why.”

ACCF is adding to the screening segment of the initiative by setting up kiosks at five medical colleges. There’s a six-member team to run each kiosk, which has been visualised as a friendly place where, other than screening, people can access information and have queries dealt with.

A screening camp, organised by the Assam Cancer Care Foundation, in progress at a centre in Dibrugarh

Technology inputs feeding the programme include a ‘digital nerve centre’, crafted by Tata Consultancy Services, that provides networking and data analysis to better dispense clinical care. There’s also a ‘command centre’ to combine the different elements and procedures in the system. That takes in remote instrumentation, tele-radiology, tele-pathology, tele-genetics, counselling and tele-consulting.

Backing from the Assam government has smoothened the programme’s progress, improving acceptance by the community and ensuring that the infrastructure to treat cancer sufferers is available. The distributed care concept could not have been made functional without such support.

Distributed care is about separating the detection, diagnosis and treatment stages of cancer. Care and treatment are ‘disaggregated’ through the setting up of a network of facilities at three levels. At level 1 are specialised cancer hospitals. Level 2 comprises units attached to government medical colleges with adequate expertise and equipment, and level 3 has primary health centres and district hospitals. “Most important is level 4, our outreach programme,” insists Dr Chopra.

Awareness promotion events in Dibrugarh (above) and Guwahati

More in the pipeline

It is estimated that more than 90% of cases can be handled at levels 2 and 3. Patients can get a diagnosis and a treatment plan without having to travel long distances, leaving only complex cases for level 1. A straightforward outcome here is reduced cost for the patients and their families, not to mention an improved likelihood of receiving and continuing with the necessary treatment.

As the programme matures, its features are being enhanced. Palliative care is a fledgling as of now but the hope is that it will, in time, become an integral piece of the whole. Helping patients find money for cancer treatment is another priority for ACCF, which works on this critical aspect by tapping government schemes and donors.

Finding quality professionals, particularly doctors, to join the programme is an exacting task. The problem is likely to ease with the setting up of the Histopathology Centre in Mumbai. Run by the Alamelu Charitable Foundation, an associate organisation created by the Trusts, the Centre will presently be offering fellowship programmes to student doctors, who could then be absorbed into the operations in Assam and elsewhere.

“Our partnership with the Assam government is for 30 years; that shows our commitment to the long-term,” says Dr Chopra. “A foray so deep into public health, in magnitude or scope, has not been done. We have learned a lot and we are learning every day. We are in uncharted waters, though; nowhere in the world has something like this been tried out. If we can pull it off in Assam, it can be pulled off anywhere in India.”