|A meeting of India’s very first Patient Advisory Group, set up by Tata Trusts' Cancer Care programme, in progress in Assam|
“Cancer seems like a big problem but it really isn’t if we decide to fight it together. What is important is to help the cancer patients through their journey,” says Vandita Sharma, a cancer survivor. Vandita is a participant of the Patient Advisory Group (PAG) set up by the Tata Trusts' Cancer Care programme in Assam.
Initiating the big fight
Tata Trusts have been a pioneer in the field of cancer care since the 1940s, engaged in education and research in oncology to improve treatment modalities and provide access to affordable methods of treatment. Over time, to reduce cancer-related mortality, the Trusts shifted their focus to preventive programmes for early detection and treatment. Now, an ambitious programme of the Trusts, the Tata Trusts' Cancer Care programme, is looking at improving the quality of life for patients and caregivers by creating and providing affordable, accessible and high-quality cancer care across India.
To enable maximum impact the Trusts are concentrating their efforts in Assam. The state reports more than 30,000 cases of cancer annually, 70 percent of which are reported in advanced stages, which is above the national average. The Trusts formed the Assam Cancer Care Foundation in partnership with the Government of Assam in December 2017 to create a sustainable solution to tackle the disease. The programme is being replicated and adapted in other states of the country to widen the reach of patient care and treatment.
|The Tata Trusts' Cancer Care programme’s Patient Advisory Group aims to get feedback and inputs from patients, survivors and caregivers on all aspects of the patient journey|
Unlike traditional patient support groups, the aim of the PAG is to get direct advice, feedback and inputs from patients, survivors and caregivers on all aspects of the patient journey — from awareness, screening, diagnosis, treatment, palliative care, affordability and life after treatment. These valuable inputs will allow the programme team to bring about tangible differences for the patient.
Mrimoyee Borooah from Deepsikha Foundation, says, “I believe that PAG is very essential. It is the voice of the patients and a representation of the journey that they have gone through. We need patients’ advice to gauge the difficulties they have faced, what they want and how we can improve their lives.”
The group aims to:
Feedback from the initial sessions has been overwhelming as demonstrated by 11-year old Vandita, a survivor of metastatic bone cancer who has been going for regular check-ups since her diagnosis in 2012. “I have learnt a lot from the doctors and survivors here and I am grateful to be a part of the PAG.”
The way forward
After the initial sessions, inputs have been received on various aspects of treatment, diagnosis and care. Some immediate areas of focus include counselling families and patients, providing compassionate care, prescribing suitable diets, developing a simplified guidelines booklet for those diagnosed with cancer, and creating awareness about financial help available for cancer treatment.
The group is enthusiastic about taking the message of screening and early detection to the semi-urban and rural areas of Assam. They are keen to provide support to programmes being conducted locally.
To make the PAG more effective and responsive, the Trusts have invited Diana Crawshaw, Chair of the Patient Reference Group at Kings College, London, to share insights and best practices. The learning will be invaluable to the new venture. Further, the current PAG is the first of many, as the Trusts believe that only by truly listening to those who have experienced cancer directly or indirectly can effective and holistic solutions treatment be provided.