On this episode of the podcast Terry, Kate, and Bob discuss the effort by patients, patients rights groups, and entrepreneurs to access personal health records. Under HIPAA, patients ostensibly own all their personal health information. Yet, for a variety of reasons, including cronyism among electronic health record companies, patients have immense difficulty accessing them in practice. 

Personal health records haven’t entered the 21st century. To access them, patients often have to rely on fax machines, hours-long telephone calls, and in-person office visits at every provider – even if they’re on the opposite side of the country. The lack of health records has medical implications. Without easy access – or access by caregivers or loved ones – treatments can be suboptimal. There are countless cases of patients receiving improper care while on vacation or even at a new provider because medical professionals don’t have access to up-to-date records. 

Yet there are promising signs of change on the entrepreneurial and political fronts. Dr. Bob speaks with Seqster CEO and Co-Founder Ardy Arianpour, who is striving to make health data more accessible for patients. Ardy explains his reasons for wanting health data, and how that desire eventually turned into his company that aggregates health data from all providers no matter what format they’re in and presents them in an easy to understand portal that patients can easily access. The platform is continuously updated, so users needn’t always chase their latest records. Seqster doesn’t own the data; it just collects and presents it to create a portable health record. 

On the policy front, the Trump administration issued new rules in March requiring health record providers to release patient medical records in a universal format so that third-party app developers, including Apple and Google, can develop easy-to-use apps. These rules, which health record vendors are fighting against to maintain their sky-high profits, would allow patients to access medical records from the convenience of their smartphones. Patients could then temporarily share their records with their providers or caregivers with the touch of a button like we can currently share our locations. Healthcare quality would improve. Stress of accessing medical records would decline. 

Kate interviews Marie Dagenais-Lewis about inclusive workplaces for the disabled. Marie points out that society – and especially the workplace – doesn’t care about disabled people like they say. Society is rife with ableism. She tells her story of how her company still makes her get several doctors notes when out on medical leave. She points out that strengthening the Family and Medical Leave Act (FMLA) would be a good first step in advancing disabled people’s rights in the workplace. She also calls on the media to increase their depictions of disabled workers.  

Listen HERE.