SUPPORT IS NOW JUST A CLICK AWAY
Private hospitals and community-led support groups are reaching out to patients via websites, Facebook and WhatsApp to offer support, disseminate information and respond to queries
Whatever Saurabh Katyal eats through the day — pancake or parantha, salad or sushi — he mentions on ‘Bariatric Support Group’, a WhatsApp group he joined three months ago.
Until last year, Katyal, a 34-year-old Delhi resident, weighed 125 kg. In January, he underwent weight-loss surgery at Delhi’s BLK SuperSpeciality Hospital.
After the surgery, encouraged by his surgeon Dr Deep Goel, also the creator of the WhatsApp group, Katyal joined it.
“Apart from patients who underwent surgery, the group’s members include dieticians, surgeons and physiotherapists from the hospital,” says Dr Goel. “Here, patients receive first-hand information, especially those who are contemplating surgery. People can share post-surgery experiences and information on how much weight they are losing. Some of them even talk about their gym and yoga routines to motivate others.”
Currently, the group has 100 active members, with more joining as the hospital conducts more surgeries.
Across India, private hospitals and community-led support groups are taking similar steps to reach out to patients, using websites, social media platforms like Facebook and instant messaging apps like WhatsApp to connect, offer support, disseminate information and answer queries.
BLK, for instance, also maintains an active Facebook page that it uses to engage with patients and the general public by sharing health-related news and updates on the prevention and cure of various diseases.
And in Mumbai, the Parkinson’s Disease and Movement Disorder Society (PDMDS), a non-profit organisation that holds free support group meetings for those with the degenerative neurological disorder, uses its website, www.parkinsonssocietyindia.com, to connect with patients online.
Vinod Kumar Bahel, 78, who was diagnosed with Parkinson’s in 1998, is one of the beneficiaries.
While Bahel looked forward to talking to experts and interacting with other patients at the PDMDS meetings, the elderly and ailing man had to travel two hours each way to do so.
“Now, every time I want to know about the side effects of some new medication I’m trying or want to follow the newest research ongoing globally, I just log on to the PDMDS website ,” he says.
The platform, launched in 2007, initially offered a panel of experts, a 24x7 helpline, data about the disease and FAQs, and minutes from the weekly support group meetings. About 18 months ago, it added an ‘ask’ box where patients and caregivers can approach experts for assistance, talk
ON OUR BARIATRIC SUPPORT WHATSAPP GROUP, PATIENTS RECEIVE FIRST-HAND INFORMATION FROM MEDICAL EXPERTS. PEOPLE ALSO SHARE THEIR POST-SURGERY EXPERIENCES. SOME OF THEM DISCUSS THEIR GYM AND YOGA ROUTINES TO MOTIVATE OTHERS. DR DEEP GOEL, a senior Bariatric surgeon at Delhi’s BLK Super-Speciality Hospital, who has created a WhatsApp group to connect patients and doctors
about their treatment plan and its side effects, and post questions.
The website now gets about 30 inquiries a week, up from just one or two a week before the ‘ask’ box.
“In addition to questions from patients, we also receive queries from family members struggling to cope emotionally with the impacts of the disease on their loved one,” says Dr Maria Boretto, CEO of PDMDS. “The website, as well as its online presence on other social networks such as Facebook and Twitter, is especially useful with Parkinson’s because mobility is increasingly compromised as the disease progresses.”
An online presence ensures that help reaches the maximum number of patients, caregivers and family members, adds Dr Mohit Bhatt, founder trustee of the Parkinson’s Disease Foundation of India. “This is especially important given the sheer number of cases, and the limited amount of funds and infrastructure available to them.”
Elsewhere too, online support group moderators are trying to innovate.
Delhi-based Fortis C-DOC uses a Facebook-based support group — called T1 Warriors — to reach out to patients with Type 1 diabetes.
“It’s been six months since we launched the group and there’s been a tremendous flow of useful information on it,” says Dr Anoop Misra, chairman of Fortis C-DOC. “We find that it’s helping doctors and patients alike. Type 1 diabetes is a very complex disease, and the Facebook page sometimes offers us details that get missed during consultation. People can also upload their glucose profile on the page and that saves them the hospital visit.”
Fortis Healthcare’s department of mental health also runs active online support groups, on Facebook and WhatsApp.
“Our Facebook groups are of two types — one where we invite students from schools, train them in life skills and work on exam stress, gender sensitisation etc; and the other for school counsellors, who are trained in clinical aspects such as suicide prevention,” says Dr Kamna Chibber, head of the mental health department at Fortis Healthcare. “We have found that such online support groups are a great way of reaching out to the community.”