My unwavering endeavor is to help realize health as a human right for all.
Part of ensuring this right means ensuring access to high quality and culturally sensitive care. New technologies can and have already advanced this right across the world, whether through informational websites and blogs, telemedicine capabilities, public health tracking through social media, or applications that help patients engage in their health care. I want to continue to add to this, and my work with Health 2.0 Austin, organizing Codeo (a code-a-thon in October) and attendance as an epatient at Stanford University School of Medicine’s Medicine X Conference as part of the Design Track is one way I can.
An epatient myself, I am substantially impacted by health technologies that have the potential to change my life in ways never imagined. I have 4 autoimmune diseases, 10 chronic health conditions, have had 4 surgeries (not related to these issues) and have been in hospitals at least 25 times. My story is a story of needing to realize my right to health. My story, and the story of patients I work with, present the ultimate argument for Health IT’s importance.
For all of my conditions, I keep a detailed personal health record which includes the results of every test I’ve ever had (and have graphed some of them to show trends) and notes regarding each issue. This PHR also includes all of my hospitalizations and surgeries, including the date of onset/diagnoses of my conditions. I am in constant contact with my doctor and other health care providers via email. I try as many mobile and web apps for health that I can. And I research and follow the development of other health technologies like telehealth solutions and medical devices. However, these solutions, the effort I expend on my care are not enough and I know they are not the best way given the technology at our fingertips.
Though HIT promises to make access to records easier, this will be a long time coming considering the challenges of adoption and interoperability. In the mean time, I can’t find an easy way to get my health care providers to collaborate and consult with each other. I find that some will individually respond to email, but many won’t offer their email or they are too busy to communicate. This leads to disparate care. And I am left as the middleman helping each understand the treatment suggested by the others. I would like to find a way to engage health care providers in collaboration with patient care that would not necessarily mean just inputting medical records into an EHR and that would not be overly time consuming or burdensome.
I’ve found many doctors are resistant to embrace technology, and this makes it very frustrating for me as a patient who knows programs out there might help my care, but doctors won’t engage with them. There are mobile and web applications, devices, and other tools that empower me as a patient. But they are disconnected from each other, meaning I cannot expect my doctors to engage in learning each tool with me as we navigate my health journey. Even those doctors who are tech savvy and willing to try new technologies have trouble leveraging these innovations to provide the best care. And like doctors, patients too are having to learn how to use the health technologies available (and affordable) to their best advantage.
We need to develop health technologies that will continue to empower every patient and engage every doctor. My hope would be that these new technologies help patients develop their health stories, stories that will be relayed to doctors to provide a full picture of those they care for such that when they come together, doctors will have more than a snapshot of the patient’s current problem and can commence meaningful conversations about health. In this way, we can transform health and health care and help everyone realize their right to health.