Epilepsy is the second most common neurological condition affecting about 70 million people worldwide and nearly 12 million people in India contributing approximately one-sixth of the global burden. Furthermore, the social stigma associated with epilepsy negatively affects the quality of life (QoL) for patients and their family. Epilepsy patients need medical assistance, awareness, and guidance regarding treatment and self-care to improve health outcome, especially in India where the majority of the population is below poverty and lacks an appropriate support system.
According to WHO epilepsy fact sheet 2017, the risk of premature death in people with epilepsy is up to three times higher than the general population and majority of these deaths are preventable. Unfortunately, there is a widespread treatment gap (75% of epileptics lacks proper treatment) and knowledge gap (ignorance and stigma associated with epilepsy) in the community. The effective program for epilepsy treatment demands constant capacity building at both individual and community level. There is an unmet need for awareness, education, and monitoring of the disease among disadvantaged epilepsy patient.
Also, it is high time that India adopt meaningful use of technology to generate a data-driven decision in designing effective healthcare program which is affordable and acceptable to the people and efficient in bringing community-wide health behavior change.
Dr. Nirmal Surya has been organizing free health camps under Epilepsy Foundation of India in collaboration with National Rural Health Mission (NRHM) at various locations in Maharashtra. In December 2017, Healtho5 solutions collaborated with the Epilepsy Foundation of India to digitize patient record and provide dedicated epilepsy helpline with 24/7 nursing support.
The nursing staff collects and enter patients reported outcomes in proprietary software (such as, fits in the last months, adverse reaction of the drug, treatment adherence, availability of drugs etc.), provide guidance and support in managing epilepsy and register patients for the upcoming camp. Information and counseling are provided on-call and in the patient’s regional language for easy understanding by the patient. The treatment protocol and questionnaire asked during the call are created by the clinical team after thorough research.
Our epilepsy-focused PHR record clinical data, such as diagnosis, symptoms, medication, family history, monthly patient-reported symptoms and on-call nurses monitor the symptoms and treatment adherence via periodic telephonic call. The collection of data points provide comprehensive insight into patients health and behavior.
Monthly call to the patient is focused on monitoring of epilepsy symptoms, drug side effects, and counseling in epilepsy management. We also provide toll-free, call back facility for the patients in need of counseling and information regarding the epilepsy treatment.
Moreover, with the evolution of technology, we were able to provide data-driven insight into the effectiveness of screening camps and patients health behavior to suggest appropriate intervention design.
As of March 2018, we have digitized 8442 patient records and provided telephonic support to about 4649 patients.
Healtho5 Solutions was able to digitize 8442 patients record and engaged 4649 patients on call across 11 districts of Maharashtra. The patient’s range from children to old age coming for free epilepsy camps. The phone call is given to the patients or parents/ guardians in case of the epileptic patients being a child.
During the call by nursing staff, we collect epilepsy-related information and high-risk patients are flagged and referred to the doctor for further assessment preventing the unforeseen event. We also provide guidance, support and epilepsy-related information to the patients and their family members and also create awareness related to the importance of treatment.
Till date, we have flagged 134 patients for anti-epileptic drugs side-effects and were able to refer them to the physicians for change in medication.