Engaging patient in healthcare and decision-making is the way forward

Poonam Bagai, Chairperson, Cankids, Kidscan

All healthcare should be patient-centered, which means for and about the patient. The patient needs to be at the center of everything and anyone engaged in caring for the patient’s health.

This is not the case though. Patients in India and elsewhere in the world too continue to be cases, the diseases they carry, revenue generators, to be researched upon. Who is talking and even listening to the patient forget about engaging him in his own healthcare and decision-making.

In my world of childhood cancer and Palliative care, this is even more acute a problem because here even the caregivers – the family – become part of the “talking over the heads” of the patient because “he/she should not or does not need to know”.

We at Cankids, Kidscan Society try to support a child and her family’s battle, and with this little help, they script their own courageous story which inspires others.
Unsurprisingly, despite the jargon about making health care patient-centered, I continue to see a big vacuum in this space. Nobody is doing it despite everyone admitting its importance.

We at Cankids, Kidscan Society have concluded that one major reason for this is that the patients in our country are not demanding enough. The day a patient starts demanding good health care as a matter of right, the picture will change drastically.

Till the time this happens, we need to step up efforts for educating patients to make them realise that it is their right to demand high-quality medical treatment and that the Right to Health is a basic need and not a privilege.

We educate patients, their parents, and survivors by weaving in concepts like “I deserve the best treatment” and “I do not deserve to suffer pain”.

It was during my battle with cancer that I realized the importance of education and empowerment of patients. From the doctor’s devastating words: “You have cancer”, to my inner voice “I will fight and win”, to my current mission in life “No one should suffer pain”, the journey has been a long and eye-opening one. As a result, I today strive to improve patients’ access to treatment and mitigation of financial hardships.

I feel it is a privilege for me to walk alongside childhood cancer patients on their journey, providing support, comfort, and a listening ear.

We run support forums in each of the 141 hospitals we work with for childhood cancer patients. These forums, driven by survivors-turned-volunteers or parents of survivors, bring together parents and doctors for moderated discussions. The effort is to inform, comfort a patient, and support her or her family.

My experience shows that the best hand-holder for a cancer patient can be a survivor who has gone through challenging times. This is what Cankids volunteers, most of whom are survivors or parents, do.

As for possible tools for empowering patients, I think artificial intelligence or Apps can play a big role in helping patients monitor their treatment. The simpler we make it, the easier it will be for a patient or her caregivers.

AI can help in propagating correct information about cancer, its cure, and destigmatisation of treatment. Simple answers should be available to a patient in his language on questions like – Where should I go for treatment after being diagnosed? Who will help me navigate through the procedures at a hospital and the treatment drills?

For example, we are trying to reach out to parents in rural areas that one of the possible signs of cancer can be a prolonged spell of fever. We want people to grow suspicious about the possibility of cancer if their child’s fever is not going away or is recurring. We are using pamphlets and pictorial messages to sensitise people drive away the fear of cancer and make them accept it as an ailment like any other.

When we talk about patient empowerment and education, I feel there is a huge shortage of patient education material and this challenge is not limited to childhood cancer.

What I am doing today would indeed have never happened if I wouldn’t have battled cancer. With my training as a bureaucrat and drive, I have tried to do my small bit to help Bravehearts battling cancer.

I draw great inspiration when I see some of our survivors making it big in the corporate world after studying at IIMs or launching startups in the field of telemedicine consultancy. And the best part is the compassion that we have managed to drill into their brains. Even today, they are ever so willing to support others and join our efforts.

In my view, patient education and empowerment are going to be a cornerstone of India’s successful march towards becoming a developed nation.

And, there can be no two opinions about the fact that raising the level of healthcare to that of developed nations would need raising the survival rate of childhood cancer. The survival rate in the West is over 90 percent. Currently, the survival rate in our country is around 70 percent but with collective efforts of the government and societies like Cankids, Kidscan we can achieve the goal.