From Tragedy to Trials: One Caregiver’s Story

This is part 1 of a 2-part interview with Naser Partovi, CEO of Wellaho, and the first in an occasional series exploring best practices for implementing online communities to prevent or manage illnesses. If your clinic, hospital or healthcare company would like to be considered for inclusion in this series, please contact dan@hivestrategies.com.

While traveling last week, Naser Partovi received a message from one of the patients involved in a clinical trial of his product: “You saved my life,” it said.

Partovi was encouraged, but not completely surprised. This type of patient satisfaction was what he anticipated when he envisioned a software tool that would link patients to healthcare providers, customized educational materials, track personal health data and provide support via social media. Partovi knew, from a painful personal experience, that there was a need for such a tool.

Diagnosis followed by frustration

In 2008, Partovi’s wife was diagnosed with breast cancer. He quit his job to be her fulltime caregiver. He and his wife spent hundreds of hours searching online for more information about her condition, and the medication and treatments associated with it. Partovi said that he and his wife were both thoroughly frustrated by the experience.

“There is really not a lot of help for patients,” he explained. He said it was difficult to separate the marketing materials from scientific materials. With so many different kinds of breast cancer, it was also difficult to pinpoint what information was pertinent to her specific type. “We wanted to know what to expect,” he said.

With heavy workloads, nurses and doctors don’t have the time to provide that detailed and customized education for every patient, he added. As a caregiver, Partovi kept notes to help track his wife’s condition, but there was no way for the physicians to incorporate those into her medical records. “They would say, ‘this is great,’” he explained, “but they wouldn’t know what to do with it because it could not be integrated into their system.”

A tool to help patients, caregivers, and healthcare providers

After his wife passed away in 2010, Partovi used his background in software technology and dedicated himself to designing a tool to help patients with chronic conditions, caregivers, and healthcare providers.

So convinced that his software tool would increase patient satisfaction and help provide a way to manage chronic conditions, Partovi introduced his product in 2010 through a clinical trial.

His first trial involved patients with congestive heart failure. Since then, the company has cooperated with medical centers to run clinical trials for patients with diabetes, obesity, and asthma. Although he acknowledges that clinical trials are usually reserved for new medications or medical devices, he added, “We wanted to go through the same rigor.”

Physicians prescribe the software tool to patients

According to Partovi, participating physicians prescribed the software tool to the patients. Although there is a subscription fee, Partovi said the hospitals have been willing to cover patients’ subscription fees in an effort to reduce their hospital admissions.

UC San Diego Health System recently distributed a news release explaining their most recent trial, Social Networking Evaluated to Improve Diabetes Management. According to the release, the trial will “study whether the use of social networking can improve patient-physician interactions and the patient’s overall health and wellbeing.”

Trial will measure changes in diabetes knowledge, attitudes, and self care

“This trial will study how an online social network may better enable patient care,” said Jason Bronner, MD, associate clinical professor, UC San Diego School of Medicine and internist at UC San Diego Health System. “With a controlled group of the patient’s clinicians, friends, family and fellow patients, we will measure any changes in knowledge, attitudes and self care towards diabetes.”

“As opposed to open networks, the use of this tool allows us to ensure that the medical information they receive and share is accurate, safe and absent of advertising,” said Bronner.

Partovi said he recognized that this online community tool is not for every clinic or medical center, only those that want to be able to monitor patients out of office, and are open to communication with their patients. Medical centers want to be able to help their patients avoid hospitalization, and Partovi believes this tool for patient connectedness can help. “Even small changes in how they are feeling can have big consequences,” he said.

Coming August 6, part 2 of the interview with Naser Partovi, Patient Online Communities: Lessons from Trials.


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Hive Strategies helps health systems create HIPAA-compliant online communities for better health, lower costs and greater loyalty.

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