In our enthusiasm to talk about government efforts to dive into web 2.0 and social media to deliver public services, I feel we often forget where it all started.  Before public service dipped their toes into the social media revolution, citizens/patients were already there. They were talking about their illnesses, creating communities of interest and interacting with each other way before e-petitions at No 10 Downing St was even launched.

The first on the scene was the empowered patient. Patients are participating in online communities to share and discuss daily life struggles to coping with rare diseases.  Here I’ve compiled a list of inspirational web 2.0 and social media stuff by patients for patients (and doctors too, if they like) ;o) I hope this will inspire us to look at what is already out there to better understand patients and try to engage with them on a level or platform they are already comfortable with. This list also includes other websites that help patients and also mobile applications that can help save lives.

An additional link I received this morning by @hadleypaul was this effort by the TV Programme ‘Embarrassing Bodies’  that managed to generate more traffic and interest on NHS information and services online. According to Paul

… Embarrassing Bodies show pulls in links, photos and uses the practice of social networking, then build it into their programmes, giving big hit rates for the NHS & PCT’s, engaging with viewers, and sharing good practice.

Click here to find out more about the event that featured Embarrassing Bodies.

No. E-Channel Overview Weblink
1.

MyHealthInnovation.com – (like mystarbucksidea.com for health)

 My Health Innovation allows people to submit ideas, other users can vote on it, and allows for ranking, eg. to create a list called “Top Ideas”. Their tag line: share, vote, and say thanks for low-cost, low-tech health ideas.

One interesting aspect to the site is its acknowledgement of the power of gratitude and that in healthcare, thank you’s or gratitude can often not be public enough. For this reason, they wanted to provide a way to say thanks and added a THANKBook that collects expressions of thanks for how an idea changed your life positively, maybe forever.

 Website

Twitter
2. HealthChapter.com

A place to talk about how to live well with disease, ask questions, share information about what is working for you, get sympathy, exchange ideas, request and recommend the best doctors, support and friendship from other patients suffering from the same disease.

This website is an online community that has videos, podcasts, health tools, ability to leave comments, a facebook page and e-newsletter subscriptions.

 Website

eNewsletter subscription

Facebook Page: 310 fans
3. Diabetes Mine Blog Here you’ll find 5 years’ worth of info on every imaginable aspect of living with diabetes — from food scales to pharma news and book reviews, to the exasperating things other people say. Blog

Twitter

Facebook: 503 fans

Videos
4. Patients Like Me

PatientsLikeMe.com is a platform for collecting and sharing real world, outcome-based patient data (patientslikeme.com) and establishes data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits.

 Website

Blog
5. Relief Insite – Consumer Web Apps This is a site that allows people to map, monitor and analyze their pain. ReliefInsite.com™, is a patented, secure, HIPAA-compliant web-based platform that provides visually-oriented pain assessment and tracking.

Through the collection of structured and unstructured data and preparation of comprehensive reports, ReliefInsite provides a longitudinal perspective of a patient’s condition in real-time, enabling improved quality of care and assessment of outcomes. This site also uses video, social bookmarking such as digg, yahoo, goolge, delicious and facebook.

 Website
6. The Weight Tracker – iPhone app

The Weight Tracker iPhone application allows you to easily track your weight on a daily basis. It can also synchronize your personal weight entries withThisCityIsGoingOnADiet.com.  This application was designed and written exclusively for the iPhone v2.0 Operating System using the Apple iPhone SDK.

 iPhone Application
7. Pharma Surveyor – Consumer Web App It’s not just interactions, but toxicities involved with each drug that can affect patients. This tool reveals a much broader assessment of med risks. By integrating with partners like DestinationRx, this tool provides an additional layer of safety and vetting using powerful math and analytics. Risk is shown for each drug, plus the cumulative risk of an entire multi-drug regimen. By adding personal information about the side-effects the patient is showing, it can link side-effects to the current drugs. Then it can do a diagnosis showing where the risk is coming from, with an option to show potentially safer options that still deliver the needed therapeutic benefits. Website
8. ADAM – iPhone App

The Adam Health Navigator

Puts personalized health content on iPhone–click a body part on an image of the body, or search for information. Essentially it puts commodity-level health information on the small screen. Cool features, some geomobile-related some leveraging multi-function nature of iPhone: Find nearest ER; prompt to call 911; educational videos for conditions; connect to doctors in your neighborhood.

 iPhone Application
9. MyMedLab – Consumer Web App Web-based tool lets you choose a lab test online. A physician approves order instead of a doctor’s visit in real life. You can find a lab in your area. The tools help you choose tests based on gender, age and disease profile. Results interpreted by an MML doctor and put in your PHR. Website
10. Google Health – Online Medical Records for patients
  • Organize your health information all in one place
  • Gather your medical records from doctors, hospitals, and pharmacies
  • Share your information securely with a family member, doctors or caregivers
Website
11. Microsoft’s Healthvault – Online Medical Records for patients HealthVault is divided into two sections, one for individuals and another for healthcare professionals.

It lets you …

  • Organize your health information, with everything in one place
  • Simplify your life: enter health info once, use it in many ways
  • Gain insight with data that helps you make informed decisions
Website

Twitter

Facebook: 1,154 fans

YouTube Channel: 76 subscribers
12. Vitals – Choosing the right doctor

Vitals was created to give consumers the tools — for the first time — to make informed decisions about which doctor to choose. Our web site offers you a variety of ways to find a doctor that’s right for you.

We do this through our 360 view — factual information on a doctor’s expertise and practice, consumer reviews, and recommendations from other doctors. Once you’ve decided what information you need, you can use Vitals to do a pre-visit checkup on your doctor. At no cost to you.

Vitals compiles information on physicians from a wide variety of sources. The result is a free Physician Profile, which is made available to consumers, at no cost.

 Website
13. Health Grades – Rating doctors, hospitals and nursing homes HealthGrades’ healthcare ratings, information and consumer decision-support resources serve the following groups:

Consumers

Visitors to HealthGrades.com find quality ratings and cost information for the nation’s 5,000 hospitals and 16,000 nursing homes as well as in-depth profiles of the nation’s 650,000 physicians. As a leader in the consumer revolution in healthcare, HealthGrades receives more than five million unique visitors to its consumer Web site each month.

Hospitals

HealthGrades helps hospitals understand, improve and communicate the quality of care they deliver through a suite of products and physician-led clinical-advisory services. HealthGrades currently works with more than 400 hospitals nationwide and produces well-respected public studies of hospital quality in areas that include clinical excellence, patient safety and women’s health.

Employers/Health Plans

Many of the nation’s largest health plans and employers offer their employees and plan members access to HealthGrades Health Management Suite, a complete set of decision-support tools that include provider ratings, health optimization modules and healthcare finance tools.

Liability Insurers

HealthGrades helps more than 40 liability insurance companies, including the top three nursing home and hospital insurers, assess providers’ quality and risk potential.

Physicians

HealthGrades allows physicians to educate patients about their specialties through HealthGrades’ consumer Web site and the HealthGrades Connecting Point™ Program.

 Website
14. Everday Health – Portal

There’s much to explore on EverydayHealth.com, including:

  • More than 100 health centers loaded with in-depth, original information on the diagnosis, management, and prevention of diseases and conditions, as well as information on how to live a full, healthy life. Meet the Everyday Health staff, as well as the contributing writers and editors and medical reviewers.
  • Helpful questions and answers from our board-certified experts at top-tier institutions such as Harvard Medical School, Memorial Sloan-Kettering Cancer Center, Mount Sinai Medical Center, and more. Meet the Everyday Health experts.
  • Thriving communities of individuals just like you, who are managing or caring for others with a range of conditions and health concerns. Visit our Support Groups.
  • Interactive features including webcasts, videos, photo galleries, tools, trackers, and blogs to help you take a hands-on approach to managing your condition or improving your general health. Check out our tools page.
  • Thousands of recipes to help you cook healthier every day.
    		• Website

    Twitter

    Facebook Page: 253 fans
    15. Ask Manny Hernandez (the founder of Tu Diabetes)

    - Social media, non-profits and health 2.0 blog

    		 About Manny Hernandaz (Diabetes patient blog)

    > social media expert and diabetes advocate

    > author of ning for dummies

    > twitter marketing for dummies contributor

    > president of the diabetes hands foundation

    > founder of tudiabetes + estudiabetes

    		 Blog

    Twitter
    16. Six Until Me – Diabetes patient blog

    A blog by Kerri Monroe who is a diabetes sufferer.

    		 Blog

    Twitter

    Flickr

    Facebook

    dLife

    Kerri on Health Central
    17. Health 2.0 Blog A community blog for and by the Health 2.0 community. Blog
    18. Organized Wisdom Blog – wikipedia for healthcare
    • OrganizedWisdom Health is a human-powered, physician-guided search service for health dedicated to helping people find health information, resources and services they can trust. We publish hand-crafted, high-quality health search results called WisdomCards that provide easy-to-understand research notes, fast facts, and links to top health information, resources and services.
    • OrganizedWisdom, named to PC Magazine’s Top 100 Undiscovered Web sites of 2008, was founded by serial entrepreneurs Steven Kreinand Unity Stoakes.
    		Blog

     


    Link to original post