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There's been a shift in the center of authority in healthcare. It's moved from established authorities, like doctors, to the people who are experiencing a given condition. The proof can be seen in the growth and popularity of websites like WebMD, Wego Health, and PatientsLikeMe.
And technology now provides new ways of sharing knowledge. As feature phones improve and as smartphones begin to saturate the market, users have unprecedented access to information and to each other. The exponential growth of the iPhone and Android app marketplaces show that users are looking for new ways of doing old things.
At the intersection of user-managed health and technology lies an opportunity. A mobile solution that enables users with a chronic condition, accustomed to managing it alone, to track their health socially and to access the learnings of the larger community.
Users can passively hold each other accountable in a way that is difficult for them to do alone. A mobile solution removes some of the hardest barriers to better record keeping. It also provides a forum for knowledge-transfer, letting users optimize their treatment at a quicker pace.
OMG - My Pancrease Just Texted will explore a concept for a mobile community geared towards supporting diabetics in better managing their health, together.
We will focus on examples of how mobile devices are bringing healthcare to underserved communities in rural Africa. How can we diagnose pneumonia with a $5 machine hooked up to a cell phone? How does a glowing pill bottle and a cellphone connection ensure that 85% of people take their HIV drugs in South Africa? And, what can the US learn about these experiments vis-a-vis privacy, rural access, and cost containment.
Social media platforms create new challenges for healthcare practitioners and other professionals who actively participate in online communities that have emerged on Facebook, Twitter and similar applications. While it's not unusual for those with chronic health issues and long term medical problems to build close relationships with care providers "in real life" - legal, ethical and practical issues emerge when patients/clients seek to add care providers to online networks.
How, for example, should a pediatric nurse respond when a cancer patient's mom wants to become a Facebook "friend"? What parameters must be established now that these public conversations could become of an official medical record? What else is preventing medical staff and healthcare organizations from adopting social media?
Engage with panelists - patients and healthcare workers - who actively use social media and are articulate advocates for its benefits in the complex world of healthcare delivery. Panelists for this session have developed ways to establish appropriate boundaries without creating barriers to health education and empowerment.
Attendees will develop a more sophisticated awareness of privacy and engagement within online communities. They'll learn how those in the healthcare community have dealt with significant concerns and developed effective ways to resolve ethical conflicts, and will leave the session with a framework for addressing similar concerns within their own networks.
A few times each year, the press buzzes about the latest scientific advance that will someday cure any one of the diseases we fear the most. Nearly every one of these will turn out to be nothing more than a news story and far from a pill that can help improve our health. We spend hundreds of millions of dollars every day on research, as we struggle to find the "magic bullet" that will rid the world of conditions such as cancer, heart disease, and diabetes. We almost never find the magic.
While the big, historic scientific advances may be what dominate the headlines, in the end, it's the small improvements and better utilization of the technology we have already have that will ultimately lengthen our lives and improve its quality. These technologies don't come from labs filled with test tubes or cell cultures, but rather from labs filled with computers and the programs that run them. In the future, it will be digital technologies that prevent, treat, and finally cure diseases and not the latest "blockbuster" drug that has yet to be discovered (and might never be).
Digital technologies can already help us understand which treatments are best for us, what diseases pose the greatest risk, and how diseases spread among us. They can improve our interactions with doctors and improve access to care for everyone.
Instead of waiting for the next miracle drug to be developed, you might find the miracle was there all along right inside the computer you use every day.
The Health 2.0 and Open Gov movements have helped unlock large repositories of data - from user-generated data in hundreds of online communities to mobile devices to federal quality indicators to medical record data within provider organizations. But much remains to be done to connect these disconnected islands of data to generate information that's meaningful and actionable by end users. And what happens when you link informed patient communities with their health data? As Clay Shirky says, it gets weird. And interesting.
A number of communities have cropped up to promote access to medical data and the integration of user-reported and behavioral data within the clinical decision stream including healthdatarights.org, #healthapps, #health2dev, #73cents, #getupandmove and #WhyPM. With the opening up of health datasets, platform APIs and increasingly sophisticated analytic engines to make user-generated health data clinically relevant, we can finally unleash the wider developer community to build robust and integrated tools to improve health and healthcare.
This session brings together some of the leading voices in the Health 2.0 movement to discuss and demo technologies that help access, mine, display and distribute control of health information across a wide variety of interfaces and devices. We will also hear how government is opening healthcare datasets for access by the developer community and how patients are increasingly becoming "n of 1" platforms.
This presentation will highlight the Connecticut Health Foundation’s (CT Health) partnership approach to decreasing racial and ethnic health disparities through social media. CT Health’s social media goal is to build public will that will move people to act(ion) – and along the way – create a social movement to toward health justice. Cited as one of few foundations of this size that is investing in social media to create dialogue about health disparities beyond academic circles, CT Health has partnered with social media experts, public health professionals, and community advocates and influential leaders. Recognizing there is no clear blueprint for philanthropy using social media to do this work; CT Health will share its path to raising awareness about the consequences and implications of health disparities via social media.
There are endless tools that purport to make people healthier, from mobile phone apps to blood-pressure-tracking software. But what, truly, is the impact of these tools? Are they motivating healthier behaviors? Are they improving people’s health? And more important, are they being used by the people who need them most?
This panel centers on the challenges of driving robust outcomes from technology platforms and the recipe for achieving the greatest health impact. Our focus will be usability (how to design tools so they are used), activation (how to encourage adoption) and retention (overcoming systemic barriers to encourage continued use).
Technology is often seen as a problem-solver. But inciting new models for behavior is only easy if done right. This panel will push people to think in fresh ways about behavior change and highlight what else is needed to move the needle on creation and use of winning health technology.
Research shows online health communities (OHCs) offer extensive benefits to members. But the variance in quality and effectiveness is huge. And Pew Internet research shows only 52% of adults with multiple chronic illnesses go online for health information. A good OHC .has the power to change lives. For many people, the worst day of their life is when they’re diagnosed; OHCs can provide respite, education and empowerment when members otherwise would feel alone. There’s as much demand for, say, an OHC on Raynaud's Phenomenon as there is for one on knitting. Yet while Ravelry is bustling, gorgeous and easy to navigate, good luck finding a useful forum about life with cold toes and hands. OHCs could be better. They need a governing board, or a set of principles to aspire to follow. I would lead a presentation on: Strategies for helping OHCs get around black hat SEO so they’re easier to find, especially by novices; Ways OHCs can partner with hospitals or other organizations, avoiding conflicts of interest while capitalizing on their financial stability and resources; Techniques for teaming with non-profits to extend reach; Ways to reach under-served populations, including people of color, families below the poverty level, rural communities and the aged; How to keep members long-term using better I.A. and usability; Using strategies of the biggest OHCs for niche OHCs
by Todd Park
by Mitch Rothschild
What does finding the right doctor have to do with finding true love?
The answer is Matchmaking. Think about the world of online dating. Singles use the web to find romance because it’s the perfect tool. Same idea when you're in need of a doctor. Patients use Vitals.com as their guide to physicians. It is the perfect tool before, during and after a doctor's visit experience, which is something essential for todays empowered patient.
With social networks and the explosion of health related communities, we have an opportunity to reach out, connect, and begin to address issues that still plague patients undergoing treatments for cancer.
As a 3-time survivor, I've seen remarkable advancements in the way patients interact and help each other over the past 20 years. While the elusive cure for cancer seems like it’s a million years away, patients and others engaged in online communities have the power to connect and solve issues affecting someone’s treatment or quality of life.
Learn how to leverage existing communities and social networking sites to find information that can make an immediate difference in a cancer patient’s life. From tips and tricks for managing chemotherapy treatments to finding workarounds for drug therapy side effects, the collective wisdom of today’s patients can be harnessed to enhance the quality of life for tomorrow’s patient.
Seek. Source. Solve. Survive.
Social media has seen rapid growth, but healthcare, a highly regulated and sometimes conservative industry, started as a somewhat reluctant player. Challenged with the need to comply with HIPAA guidelines as well as FDA marketing policies--even before the agency had addressed social media--healthcare organizations and their audiences were left to figure it out as they went along.
Led by some smart innovators, social health emerged in 2010 as a force to be reckoned with. Still, there have been missteps as well as successes, and many questions remain. Chief among them is the ethics of social media in healthcare, and how transparency may or may not be the ultimate cure-all. Two social health advocates--a leading social health consultant and an executive from one of the nation's premier hospitals--will lead an interactive discussion to explore the multifaceted challenge of social-powered ethics in healthcare.
Some of the topics they'll tackle include the birth of the fPatient, the over/under on disclosure, the friendly ghostwriter, and turning regulatory and legal into champions. Attendees will help shape the conversation and walk away with actionable strategies to apply to their social media efforts.
by DJ Edgerton
Could you save a life in 140 characters? That was the challenge put to the development team at Zemoga, a leading interactive agency. Using the Twitter API they created Follow Me, a Twitter app that connects patients, doctors and caregivers. While many pharma and healthcare companies have grappled with how best to use social media, firms like Zemoga have taken it to the next level by focusing on the patient first. Follow Me lets disease state sufferers update physicians, family members and other caregivers on their health states as easily as tweeting about Justin Bieber or last night's baseball game. An easy to use interface let's them select an emotional or physical state and it's sent out to a private Twitter network made up of followers that have been authorized by the patient. Doctors can view all of their patients statuses through a customized dashboard and follow up with the ones who've expressed a negative emotional or physical state. They can ask questions about physical conditions, compliance with drug prescriptions, and other highly relevant and personal subjects. Family members and caregivers can also check in, monitoring conditions and sending reminders to patients about diet, compliance or other healthcare related matters. While a Follow Me demo will form the heart of the presentation, we want to encourage a discussion about how pharma/healthcare can move beyond the current "mass market" approach to patient communication and engage individuals using social media.
11th–15th March 2011