Okay, so you're devastated because you've just discovered you've got cancer. After the initial shock, you start collecting your wits and try to figure out how you're going to fight the disease. You start by taking long leave from work, call for family support and move, bag and baggage, to one of the existing Meccas of oncological care in the country -- Tata Memorial Hospital, Mumbai, CMC Vellore, or AIIMS, New Delhi. Had you been from the northeast, or any place far away from these centres, you would have had to spend an additional Rs 4,00,000-5,00,000 on rent, commute, travel etc., apart from dealing with the discomfort of living away from home, undergoing weekly rounds of radiotherapy, chemotherapy and, possibly, surgery. Recovery would be painfully slow, with frequent referrals to the doctor to track your response to the disease.
But all that is set to change, with a path-breaking nationwide initiative in the area of cancer care. The programme, a brainchild of the Tata Trusts, involves setting up hospitals in tier-II and tier-III towns, in partnership with state governments, over a period of two years. The initiative, one of the biggest in the healthcare segment in the world, comes with a unique distributed care model.
A silently spreading malaise
As a low- and middle-income country (LMIC), India is facing a double whammy on the healthcare front. While it hasn't yet controlled or eliminated a host of communicable diseases, it is also staring at spiralling cases of non-communicable or lifestyle ailments such as diabetes, cardiovascular disease and the Big C. According to data released by Indian Council of Medical Research (ICMR), non-communicable diseases (NCD) have shot up from 30.5 per cent (Disability Adjusted life years) in 1990, to 55.4 per cent in 2017, with cancer cases being the second largest in number.
“The numbers are probably grossly under-reported, since diagnosis is low and patients present themselves late for treatment,” says Dr Arnie Purushotham, Medical Director of Tata Trusts Cancer programme.
How the model will work
The distributed care model will work with one key principal in mind -- bringing health care to the patient, by ensuring that the estimated travel time to reach any centre is no more than three hours. The Level-3 hospital, a 40-bedded facility that offers chemotherapy, will be a day care and diagnostic centre located close to the district hospital. Some centres will offer radiation as well. In case a centre is located far away from the medical college or district hospital, it will have a mandatory trauma unit. “Models like mobile radiation vans are interventions that we will consider to ensure optimal use of resources,” Says Dilpreet Brar, Founder and MD of MedECUBE, a Gurgaon-based health services company. MedECUBE’s is the project manager of the programme with a mandate is to assess the land identified by the government, work with the architect on evaluating the design, and the medical director of Tata Trusts on finalising the clinical protocols, recruitment and training of personnel.
The Level-2 centre will be a 120-bedded facility, close to a medical college, whose departments of education and healthcare will work together. This hospital will become a superspeciality care centre.
The Level-1 hospital, a large facility with 300 or more beds, will conduct research and serve as a centre for reading tele-radiology and tele-pathology reports, assessing each case and prescribing the course of treatment in accordance with clinical protocols. Four to five L1 centres are planned as of now across the country.
The command centre will be a hub offering tele-radiology, tele-pathology and patient navigation services for the L1, L2, L3 centres. It will not be seeing patients.
In Assam, training has started, with general physicians learning to recognise cancer symptoms. The plan is to use screening and diagnostics to treat the disease in early stages so that survival rates improve. Ninety per cent of the cases are to be handled in L2 and L3. Only the complicated cases of cancer will be handled by specialists at L1.
Once the patient is within the system, all his records go online, and the standardised protocols that have been set and adopted will be applied. An oncologist would only be needed for monitoring. The patient will go through 15-20 cycles of radiation and chemotherapy in the district at L3 itself. The idea is to ensure the patient gets cancer care without having his life disrupted. He should be able to avail treatment, go back home and continue with his daily routine. Only complicated cases get referred from L2 to L1, which is a city-based large facility like Tata Medical Cenetr, AIIMS or CMC Vellore. “Eventually when the system stabilises, we hope only 5-10 per cent of the cases will go to L1,” says Lakshman Sethuraman, head, project management group, Tata Trusts Cancer care programme.
The idea is not to have apex centres like Tata Memorial and Tata Medical Center, or to build large city-based end-to-end campuses, but to distribute care so it is more accessible.
Different states, different partnerships
Different partnerships are planned with different state governments. “We not setting up facilities from scratch in large numbers. It is all about partnership with state governments and using existing public health infrastructure,” explains Sethuraman. In Varanasi, for example, an L1 centre is already up and running in partnership with the central government. An existing brownfield project, Railway Cancer Institute, has been renovated and expanded. The project is complete, functional and has seen over a thousand patients in the past four months. A second one at Benaras Hindu University is expected to be commissioned by next year. Spread over 15 acres, it will be a 350-bedded facility (with a provision to go up to 500 beds), located 20 minutes away from the Railway Hospital. The Railway Cancer Institute is focused on liquid cancers and the BHU unit will focus on solid tumours, education and research.
Kerala is interested in an entirely different model called the command centre. This will be an apex facility with a number of oncologists, radiologists, pathologists. The command centre will be fed information from the network’s trained technicians and nurses. Using sophisticated digital infrastructure, high resolution images from L2 and L3 will be transferred back to a hub, and reports will go back to the treating physician in 7-8 hours.
A level 1 Hospital is coming up at Tirupati, Andhra Pradesh. It is expected to have 20 linear accelerators eventually and six to begin with, and it will be a hub for the region.
In Karnataka, the trust is creating a holistic document, like an implementation roadmap on how the state government can equip itself to handle cancer care over the next 5-10 years.
For actual implementation, the focus is on under-served states. Jharkhand, Bihar and Orissa are in dialogue for a distributed care model similar to that of Assam (See Box: The Assam Model), though not as large. It will, instead, be a set-up of 8-9 centres that come with the promise of reduced travel time.
The networks can be operated completely by the state or jointly with the Tata Trusts. An L2 unit will involve coordination between the health and education departments because it falls under the ambit of medical education, and is located close to a medical college. An L3 unit, on the other hand, falls under the ambit of public health because it is next to a district civil hospital.
For screening, the trust is trying to get the state governments to start the programme under existing schemes that are lying underutilised, such as National Tobacco Control programme (for oral health), screening for breast and cervical cancer by training Asha workers, Auxillary Nurse and Midwife (ANM) and general physicians. These programmes have not been a priority because these state governments have been focusing more on maternal health, sanitation and similar grass root level problems.
“So you do three things. First, raise awareness so that patients can understand their symptoms better. Second, launch effective screening programmes and then finally, once the patients present themselves, work as clinicians to treat them effectively so the mortality rate in India comes down," adds Purushotham.
Fifty sites have been identified specifically and another 50 are being considered currently.
Designing the protocols
The National Cancer Grid (NCG) was established by the Department of Atomic Energy and Tata Memorial Hospital, Mumbai, seven years ago. One hundred and thirty hospitals across the country form the crucial network that provides services to 70 per cent of the patients across the country, with more than half the load being taken by Tata Memorial, CMC Vellore and AIIMS, New Delhi.
All patients will have to undergo treatment specified under protocols set up by the NCG, which has published them across all types of cancer. The protocols are in line with those of the National Comprehensive Cancer Network (NCCN) of the United States, which are uniformly used across the world. For Indian patients, the protocols may have to be defined because some cases are specific to a particular region and population.
The protocols are detailed surgical and non-surgical pathways. They will be supported by tele-pathology, tele-radiology and Tumour Boards, which will review deviations in a patient's treatment regime. Once protocols are put in place, any doctor who manages a patient will give treatment according to these protocols. "This facilitates standardised treatment at every centre across the network,” says Brar, who is herself is a neurologist. A panel of doctors led by Harit Chaturvedi, Chairman, Cancer Care, Max Hospitals, senior doctors from Tata Memorial, AIIMS and NCG put together the protocols under Arnie Purushotham’s guidance.
This protocolised care is critical to ensure two things -- one, no matter where the patients goes, he gets the same standard of high quality care and two, survival outcomes are similar, no matter where the patient goes.
A tumour board is a group of specialist oncologists, surgeons, onco-pathologists and onco-radiologists who jointly discuss a patient's file. In the case of Tata Trust hospitals, the tumour board will sit across the network virtually or at the site to discuss the patient and the treatment to be given. Importantly, the electronic system will be designed to ensure that no caregiver can default unless the tumour board specifically states that a protocol does not apply to the patient and alternative treatment can be given. “Every patient’s case will go through a specialist without his (the patient) having to move,” adds Brar.
The software and digital infrastructure
One of the key aspects of making this system work is to create a digital network so that clinical care effectively takes place on the hospital network system. All the hospitals will be linked to the command centre seamlessly.
Says Sethuraman: "While we are tapping into the expertise of TCS and we like some components that they have designed, it is not mandatory to go with them. Hospital management systems and electronic medical records for patients are just the easy parts. The command centre is a new concept that has not been done globally. We want to combine everything into one system like an E-ICU with tele-radiology, telepathology, and everything else all in one place.”
At least 18 different services will be offered to hospitals in the B2B segment, such as remote instrumentation, data analytics, tele-radiology, tele-pathology, tele-genetics, counselling and normal tele-consulting, because there may be doctors in remote areas.
To set up the digital infrastructure in a greenfield project is easy. What is difficult is to change in existing hospitals, and therefore, a key point is to create a system capable of interfacing with systems which are already in existence. “That is quite a challenge, but essential to ensure data can be transferred where it needs to be looked at,” says Purushottam. Some centres have homegrown software, some don’t have any software, so an elegant plug-in is required that will either implement the software from scratch or extract the patient data from existing software and move it across to any centre. “We will have to look for open source and simpler solutions that remote centres can pick on,” says Sethuraman.
Ayushman Bharat and cost to patient
Much of the programme at the state level depends on Ayushman Bharat for financial sustenance. The kind of patients that are expected will need government schemes and state-subsidised insurance. “We had begun working on the programme to cover cancer care appropriately before Ayushman Bharat was announced and now we are in a dialogue with the central government,” says Sethuraman. Many insurance schemes leave out certain expensive, albeit mandatory procedures, such as diagnosis and OPD care which make up a large part of a cancer patient's expenditure. surgery may not be very expensive. “We advised Assam on the Atal Amrit Abhiyan, State insurance scheme,” Sethuraman adds. States like Telangana, Assam, Andhra Pradesh have good cancer care schemes.
For low-cost providers like Tata Cancer Care Hospitals, it is crucial to work with insurance schemes. “At present, we are collating all procedures that are over a particular threshold, say, Rs 500, which may be difficult for all to afford. We are drawing comparisons between various insurance schemes like the NTR Vaidya Sewa, Arogyasri and Atal Amrit Abhiyan, so that we can make recommendations to the Centre on costs and inclusions,” adds Purushotham.
As of now, no schedule of charges has been made but the trust will be largely guided by insurance. “That is where we will be forced to peg our costs, and the challenge for us will really be to keep them low, otherwise our centres would bleed,” says Sethuraman.
The many partners
Sethuraman and Purushotham have forged a panel of partners, both clinical and research driven, as well as administration and infrastructure related. There are over ten clinicians from across the world advising them on the programmes in their individual capacities. Research dialogues are on with Mayo Clinic, John Hopkins, and Kings HealthPartners. Local partners include Tata Medical Cenetr-Kolkata, Tata Memorial under Department of Atomic Energy Centre. Technology partners include Reliance Jio, TCS, Tata Communications and the world’s best equipment suppliers such as Varian, Elekta, GE, and Siemens. Large infrastructure firms with rapid and innovative technologies, such as ADITAZZ, are being roped in to set up hospitals quickly.
The manpower requirements
This is a huge challenge. In Assam, the numbers have been worked out, recruitment is on and training protocols designed. “We have also adapted training for workers to take on more responsibility, taking tasks which are of a lower order away from doctors and nurses. We have operated that model quite safely and effectively in my cancer centre in London,” explains Purushotham.
Palliative care and end-of-life matters
Providing dignified, painless end-of-life care is crucial for terminal cancer patients, as there is precious little that therapy can do for patients diagnosed with the last stages of the disease. In such cases, palliative care becomes an important part of the care. A protocol to address this need has been designed, led by the best clinicians in the country, to ensure that patients have access to painkillers and other medication to help them lead a better quality of their remaining lives.
Government support
ICMR set up a national cancer registry in 1981, collating data from government hospitals, private healthcare institutions, nursing homes, clinics, diagnostic labs, imaging centres, hospices and registrars of births & deaths. The registry covers about 10 per cent of India's population. According to data given by the National Institute of Cancer Prevention and Research (NICPR), the apex body under the ministry of health which coordinates programmes pertaining to the disease in India, the most common cancer in India is cervical cancer (women), with a death occurring every eight minutes. Half the women diagnosed with breast cancer die of it. As many as 2,500 persons die every day in India due to tobacco-related diseases such as head and neck cancer. Smoking is responsible for one in five deaths among men and one in 20 among women, and accounts for an estimated 930,000 deaths each year.
The estimated number of people currently living with the disease is around 2.5 million, with some 700,000 new cases being added every year.
ICMR set up Population Based Cancer Registries (PBCR) at 33 locations across the country and 117 Hospital Based Cancer Registries (HBCR). There is consensus that about 60 per cent of cancer deaths can be averted with improved preventive and screening facilities.
PBCRs systematically collect data on all new cases occurring in a well-defined population from multiple sources of registrations (SoR) such as government hospitals, private hospitals, nursing homes, clinics, diagnostic labs, imaging centres, hospices and registrars of births & deaths. HBCRs are concerned with recording information on cancer patients seen in a particular hospital, irrespective of the patient's residential status.
The data generated has led to the setting up of the National Cancer Control Programme (NCCP) of the Department of Health and Family Welfare under Ministry of Health and Family Welfare (MOHFW). The initiative offers direction to the cancer control programme in the states for disease prevention, setting up treatment facilities, allocating resources and assessing the impact of specific activities such as screening and awareness generation.
Hospitals benefit by using the registry data for improving their practices and services.
If all the elements fall together, the Tata Trusts Cancer Care programme could reduce cancer to a manageable disease and serve as a beacon for oncological care in many countries. Already, it is being talked about at major oncology conferences around the world.
The six-point agenda
1. The keystone of the model is to develop infrastructure and three levels of hospitals to map the country, with complex cases being referred to level-1. The three levels are:
Level 1 hospital: Will have 300 beds offering complex therapies and research
Level 2: Will be 120-bedded, near a medical college, offering common diagnostics and complex treatment.
Level 3: Standalone cancer care centres with 40 beds (could be fewer or more depending on local needs), near a district hospital, offering chemotherapy (some will also offer radiotherapy).
All centres will have a mandatory trauma unit if far away from the district hospital or medical college.
2. Creating awareness, prevention and early detection through health communication and screening.
3. Creating integrated clinical guidelines through the National Cancer Grid.
4. Development of human resources through upskilling the existing force as well as training new entrants.
5. Creating community-based palliative care for terminal patients.
6. The technology link for implementing clinical protocols across all Tata Trust centres.
The Assam Model
Assam will be the first state to be comprehensively mapped. Seventeen centres will come up in places like Barpeta, Dhubri, Diphu, Jorhat, Karimganj, Kokrajhar, Lakhimpur, Nagaon, Nalbari, Silchar, Tezpur and Tinsukia.
When Tata Trusts met with Assam's Health minister Himanta Biswa Sarma three years ago, the idea was to discuss how Tata Trusts, through its association with Tata Memorial Hospital in Mumbai and Tata Medical Center-Kolkata, could help the state government set up a state cancer institute (SCI) and tertiary care cancer centre (TCCC) under central government-sponsored schemes. This national programme, launched in 2014, envisaged 20 SCIs and 50 TCCCs. So far, only 13 SCIs and 20 TCCCs have been approved nationwide. Tata Trusts helps draft applications on behalf of states to tap central government funds under various schemes.
"In Assam, We set up a joint not-for-profit company called Assam Cancer Care Foundation, in which the health minister, principal secretary-health, additional chief secretary-finance are all ex-officio members of the board. There are three directors on the board from the Trust's side,” says Sethuraman. Both the state and Tata Trusts will fund this company, which will build and operate a first-of-its-kind, three-level cancer grid in the state.
Soil testing is ongoing at the 17 sites, and the project is in the detailed design phase. Most of the centres will be up and running within 18-24 months.