Patient engagement and experience in India continues to be a back burner despite our progress in healthcare and medical facilities. If one looks at the US, Canada , Europe or Japan there are many patient engagement portals that provide information, build communities and enhance the experience of patients suffering from a certain disease as well as the patient parties that are affected.
A good example is the MD Anderson Cancer Survivors forum that brings all the Cancer survivors together to help foster a feeling of belonging and support these patients as they get their life together again.
Similar groups exist for de-addiction centers, diabetes patients and others.
In India the only group of this kind is the one run by Johnson & Johnson for New and expecting mothers through Baby Center. So does India need a forum for Patient engagement and experience ?
According to the directory of Indian medical sites we have around 3642 medical sites in the country. These sites range from Hospitals, Clinics, Medical Colleges, Dental Colleges, Laboratories and Diagnostic labs. But when I search for Patient engagement or Patient experience I did not find a single entry. Nothing for Diabetes patients network or Cancer Survivors either.
So what do patients and patient parties in India do to engage in a conversation on the disease and disease management and engage each other to improve the chances of recovery.
A few days ago I received a mail from some very young entrepreneurs who have rejected high paying jobs and instead have decided to build which would be probably the first patient experience and patient engagement portal in India.
Should to lean is the first site in India I believe of its kinds. The site is still in beta stage and should be active by August end. The site has been set up by Gunish Seth, Shaunak Misra and Purusharth Goel all three in their young twenties. The proposed site has sections which will help connecting with other patients and also to join support groups. Currently you can list your email id there and once the site goes live you would get an invite.
I think portals like this would be a big boon in India for three reasons
1) As culturally we don’t like talking about diseases, the portals will offer anonymity and help the patients to open up about their concerns and any help they receive
2) Issues like drugs, alcohol addiction and mental health can be discussed without any taboo or fear of stigma. India’s largest killer Tuberculosis is also not being tackled correctly due to the stigma and sensitivities around society
3) The reach of the internet and the format like a social site would greatly enhance its adoption and registrations
Despite all this the portal would need to register only genuine patients and checking on the authenticity of the patients would be an important factor. Also such portals can be seriously misused by Hospitals as well as Pharmaceutical companies. So safe guards have to be created for this.
Finally patient data privacy and security would be a major concern and I am sure these ambitious young men would have all that covered once the site goes live.
In Conclusion, we need such portals. With 6.5 doctors per 10,000 people India is no where close to the standards set by the west or currently followed by China. But do you know of any other portals like this ? Do write in and I will definitely cover them as well.
Until then stay healthy…