Patients are turning to the Internet and Social Media to find solutions to health problems when their doctors don’t know the answers. While some docs are overwhelmed with new literature about medical advancements and resent patients who question their advice, others welcome the self-educated patient who has found treatment alternatives online and wants to discuss them. If you’re one of those e-patients and have used social media to connect with others like you to exchange stories and knowledge, I want to hear how you did it.
Why I ask… Modern Health Talk is positioned between these extremes, at the intersection of several important trends, including rising costs, aging baby boomers, wireless Internet access, telemedicine, and increased interest in social media, digital sensors, telepresence, and smartphones & tablets. BUT… We’ve found that the good online support groups focus on a single medical condition and NOT the combination of conditions and limitations associated with aging. We so far have been unable to build a vibrant community that engages the elderly in discussions of tech solutions for aging and want to learn from the success of others, potentially partnering with them. So please share your experience by email or a comment below.
e-Patient Katherine Leon
Below, NPR reports on patients with rare diseases who are finding each other online and promoting new research. The story features Katherine Leon, a woman with an extremely rare heart condition who managed to do what many hospitals couldn’t. She set up a virtual patient registry, allowed patients from all over the world to submit their medical records and scans online, and then used the data to convince researchers at the Mayo Clinic to run clinical trials where there was no interest before. Her story became national news. Read the rest of this entry »
FORESIGHT may be the single most critical skill for the 21st Century. Knowledge quickly goes out of date, but foresight enables you to anticipate and navigate change, make good decisions, and take action to create a better future.
That’s why I’ve been a member of the Central Texas chapter of the World Future Society for years, where I meet interesting people with widely varied perspectives of the future. It’s also why I participate in so many Linkedin discussion groups on emerging healthcare issues.
The following ten forecasts came from the World Future Society’s special report, Forecasts for the Next 25 Years. It’s a promotional piece to attract new members who then get a subscription to The Futurist magazine.
Forecast #3. Nanotechnology offers hope for restoring eyesight.
Flower-shaped electrodes topped with photodiodes, implanted in blind patients’ eyes, may restore their sight. The “nanoflowers” mimic the geometry of neurons, making them a better medium than traditional computer chips for carrying photodiodes and transmitting the collected light signals to the brain. Read the rest of this entry »
Friends from Beyond explores the role of social media and digital assets after death, and the need to think about this ahead of time, even creating a digital will to say who acts as executor and who takes ownership of the accounts, which ones get deleted, as well as if any should be preserved for perpetuity.
Will future generations remember you, what you did, and what you valued? Where will they go to reflect on your life? Will it be a grave site, a virtual memorial setup as a perpetual website, or your social media accounts? Read the rest of this entry »
People worry about the security of their identity, financial and medical information when they hear stories of hacker attacks on large commercial and government websites, including AOL, Hotmail, Microsoft, MySpace, NASA, Sony, Stratfor, USBank, VeriSign, VISA, Xbox, Yahoo, and many others. They also worry when they read about Target, Google, Facebook, and Twitter pushing privacy boundaries and taking liberties with their collected customer data. Both types of stories dilute trust.
It doesn’t much help if a company that overreaches and gets caught simply promises to do better, and then if public outrage prompts potential legislation, they join industry initiatives to propose new plans for self-regulation, such as the publication of privacy policies that users seldom read.
This article addresses the question, “How Safe is your Personal Health Information?” It examines the benefits and security risks of storing your personal health information online, based on my own personal experiences and decades of IT experience. But I’d like to hear of your experiences in the comments section too.
Yvonne and I loved Anna Deavere Smith’s solo performance of Let Me Down Easy, which blends theatrics, journalism and social commentary about Healthcare, and I highly recommend watching it. PBS aired the program as part of its Great Performances series this week on Friday the 13th, how fitting with the state of our nation’s healthcare system. Here’s what they said about it.
She performs 19 characters in the course of an hour and thirty five minutes. Their stories are alternately humorous and heart-wrenching, and often a blend of both. Building upon each other with hypnotic force, her subjects recount personal encounters with the frailty of the human body, ranging from a mere brush with mortality, coping with an uncertain future in today’s medical establishment, to confronting an end of life transition. The testimony of health care professionals adds further texture to a vivid portrayal of the cultural and societal attitudes to matters of health.
That’s the topic of an article by Stephanie Baum at MedCityNews.com and a infographic created by oBizMedia.com for Mesotheliomapage.com. As it turns out, 90% of physicians are jumping on the social media bandwagon, but most use specialized physician communities more than more general purpose networks like Linkedin, Facebook and Twitter. And while they’re starting to refer patients to online patient groups, few will interact with them directly online, largely due to concerns about liability and patient privacy. The infographic below details results from several surveys.
That’s how a man in his 50s described his life to me not long ago: “It’s my long slide home.” He was feeling morose, anticipating the long holiday period from Thanksgiving through the New Year and what he knew it would arouse in him. I often see the “holiday blues“ strike people during this time of multiple holidays (Hanukkah and Christmas; as well as Ashurah, Bodhi Day, and Kwanzaa). The tendency to reflect and take stock of one’s life often triggers sadness, regret, or depression — especially during midlife.
For example, this time of year can intensify feelings of losses you’ve experienced as well as fears about change, in general. In a previous post I described how you can become frozen into a mindset and perspective that your life is fixed and will spiral downward from your middle years onward. Such a mentality restricts your vision. You can’t see that it’s possible — and necessary — to continue evolving your life, while reframing your emotional attitudes about the life changes that will continue to occur. I’ve always liked a line from one of Norman Mailer’s novels, “It is a law of life… that one must grow, or else pay more for remaining the same.”
What do we remember about our parents or grandparents years after their passing? AND
What do we want to be remembered about ourselves?
The questions surfaced after meeting Lindsay Patterson last week. She’s a young lady fresh out of college who was promoting her new business, ReflectAndRecord.com. It’s a personal history business that specializes in multimedia memoirs, and it made me think back on the memories my mom left for me in a hand-written book, “Grandma was Quite a Girl.”
Mom never got into computers like I did. She worked her as a secretary with the British Navy in Washington, D.C. without ever touching a computer, so it seems fitting that she’d leave her legacy in that little book that prompted her to write her story in fill-in-the-blanks style, with photos added. In modern times she might have used a service to create a multimedia memoir that could be passed down electronically on CD or stored on a perpetual memory website.
Novel Interactive Technology combines Wellness and Social Networking tools to Transform Senior Care
Photo: Gestrandet, by Like_the_Grand_Canyon
SACRAMENTO, Calif., July 19, 2011 – Intel-GE Care Innovations™ is announcing Care Innovations™ Connect, a new product designed to address social isolation in older adults. Developed in partnership with seniors and senior service providers, Connect helps professional caregivers monitor the changing needs of seniors while giving older adults the tools that help them build ties to their communities and avoid social isolation and loneliness. Care Innovations™ Connect includes an easy-to-use digital device that serves as a wellness communication tool and social networking hub.
The result of ten years of in-depth user research, Connect is a customizable offering that combines a range of wellness surveys, brain fitness games, medication compliance reminders, and simple social networking tools for seniors to help them “go digital” and proactively engage in their physical, social and mental health.
“Research has shown that loneliness, as a health risk factor, is twice as detrimental as being obese, and equal to the risk of smoking cigarettes and alcoholism,” said Louis Burns, chief executive officer of Care Innovations. “With Connect, we’re helping senior service providers overcome this issue by helping them identify major health deterioration in their members, while enabling seniors to stay engaged and live more socially connected lives.”
I wrote this article back in 2001 with a look 10-15 years into the future, just half way through a typical home mortgage. I republish it here, because it’s still relevant today and applicable to home healthcare and the aging-in-home market. [2011 updates are added in italics.]
Homebuyers often ask this question if they’re concerned that their new home might be obsolete before they sell and move out (or if they’re starting to think about home healthcare). Builders also ask it, since they don’t want to add new features until customers demand them but want to plan for shifting attitudes. And companies that make the products, services, and technologies want to understand the market opportunities, leverage points, alliances and risks. Although the question is simple enough to ask, the answer can be complex and involves a discussion of many technology, market and social trends.