Tag

technology

Photo by Ashley Batz on Unsplash

Patient Ownership of Data?

By | Advocate, ePatient, Informaticist | 6 Comments

Do you care about health data ownership and want to stay abreast of national initiatives to wrestle with and solve ownership issues? If so, this post is for you.

What does it mean to own my health data? Is it like owning my car or my house? Is it like a copyright? Do I own it by myself or do I share ownership with the people or systems that enter the data (my doctor, the lab, my care partner) or store the data (the electronic health record, the app, the device)? Is it ownership or is it a right, like a civil right? I confess that I know this is important, even critical, but the more I explore, the less I feel like I understand.

Much to my surprise, I was invited to attend a National Academy of Medicine (NAM) Digital Learning Collaborative meeting about Patient Ownership of Data. Participants included stakeholders from EHR vendors, government agencies, hospital and medical practices, insurance companies, patients (I was one of several), and others. See a summary here. The meeting sought to explore several questions (paraphrased by me): Read More

Community/Technology Partnerships @ Health 2.0

By | Advocate, Caregiver, Consumer, ePatient, Informaticist | No Comments

ribboncutting-icI’m a technology nerd and early adopter while also a profound technology skeptic.  My heart sings when communities of people solve problems that matter to them and theirs and then look for technology partners to automate and share their solutions. By community, I mean partnerships of people at the center of care (people, care partners, clinicians) and neighborhoods, counties and states.

Recently, I spent a few days with big data, technology, entrepreneurs, and healthcare under the big top of  Health 2.0 in Palo Alto. CA – a relatively low-key festival of mostly entrepreneurs trying to sell big data and apps with the edge of worry about engaging patients in their data and products. I felt at home with my advocacy and community browsing new ideas and new uses for technology Read More

Technology is the cutlery and the dessert

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist | One Comment
I’m preparing a presentation about Caregivers and Health Information Technology to be delivered in a month at the HIMSS14 conference in Orlando with MaryAnne Sterling. So many challenges as caregivers, as persons in the center of care, as health professionals, as administrators, and as developers. First, there are different levels of caregiving. There’s the caregiving of life partnerships: partners, spouses, parents, children, friends.  That’s different from caregiving for someone who has challenges with activities of daily living and different from caregiving someone who has diminished mental capacity, is acutely, gravely ill, or is dying. The value of technology for caregivers and the person in the center is to enhance information access, communication, tracking and scheduling. The farther along the continuum of intensity the lonelier it gets and the harder it is to carve out time for anything else, especially technology. What did we do before video links like Skype or FaceTime, before tweets, chat rooms, and social media?  They’re easy to learn, easy to execute, immediate gratification – limit  loneliness. Tracking and scheduling on paper and spreadsheets has been forever-apps have a learning curve. Searching the web is easy, but getting your personal health information is hit and miss and takes maintenance to keep accurate and up-to-date. Communication with and between health professionals remains, for me, the greatest challenge. Technology can help – but only for those who already prioritize communication. If you’re good at communicating, technology is a wonderful adjunct. If both parties aren’t good at it, technology is no help at all. The main dish of caregiving is person-to-person. Technology is the cutlery and the dessert.