How Does An Empowered Patient Approach Care Coordination? #patientchat Highlights

Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Care Coordination Means Everyone Is Working Together

 

 

 

 


You Are Your Own Best Advocate

 

 

 

 

 

 

 


Work For What You Deserve

 

 

 

 


Full Chat

MedHelp

MedHelp is an online health community that uses technology, data science, and expertise in consumer health behavior to deliver outcomes at mass scale. They help guide people through every step of their health journey and helps them achieve the results they seek.

With MedHelp, you are able to achieve the following:

  • Connect with others just like you to get advice and share your experiences
  • Track your health condition and easily share data with doctors and caregivers
  • Learn from people who have your condition by reading articles and blogs.
  • Ask questions from doctors via a Q&A forum

HealthTunes and MusicMedicine

Imagine a world where music is prescribed as medicine – HealthTunes calls this MusicMedicine – and your music prescription is just a click away.

HealthTunes is the only publicly available online streaming audio service created to improve your physical and mental health by pairing credible medical research with active music links.

Walter Werzowa (a musician, composer, sound inventor, and music producer) founded HealthTunes after learning his son was diagnosed with a rare medical condition. After visiting numerous physicians who recommended surgical treatment, Walter and his wife, Evelyne, decided to have their son listen to music inlaid with binaural beats and isochronic tones. Physicians saw a drastic improvement in his condition and began requesting more information from Walter and Evelyne on how they accomplished such a feat.

Subsequently, Walter decided to share his knowledge of the healing power of music and created the API for HealthTunes in the hopes of assisting others who suffer from complex medical conditions.

HealthTunes’ MusicMedicine regulates the autonomic nervous system and accelerates endogenous processes. Binaural beats, which are the result of two slightly different frequencies, create a third signal in the brain. Coupled with music, binaural beats restore and balance a patient’s physiology.

The goal is to allow everyone access to credible medical research explaining the benefits of the music they listen to. Thus, HealthTunes provides all users access to medical research from knowledgeable institutions as well as music therapy all in one place.

To use HealthTunes, simply go to the website, sign up, and music therapy is at your fingertips. Therapies can be listened to anytime, anywhere internet access is available and no credit card information is necessary. All therapies were created by music composers with medical research in mind to treat specific ailments.

Chemotherapy is very important in fighting cancer but can have unpleasant side effects. HealthTunes music has been shown to relieve chemotherapy symptoms in patients both during and after undergoing treatment.

Therapy for anxiety, depression, stress, as well as numerous other ailments is offered on the HealthTunes site. Chronic pain patients recorded 30 percent less pain perception after undergoing music therapy.

Walter strives to lessen the cost of medical care; therefore, the service is free to all patients. Donations, however, are accepted and greatly appreciated.

UCLA Medical Center Nephrology Department and UCLA Center for East-West Medicine endorse HealthTunes.

HealthTunes’ wish is to help you conquer obstacles you’re faced with while providing you with music therapy you can truly benefit from.

The Digital Sherpa™ Program

The Digital Sherpa™ Program helps cancer patients and care partners become more tech-savvy in order to be empowered in their health and healthcare decisions. The program is currently carried out in two different versions, either a in-person, hands-on Digital Sherpa™ Workshop or through the creation of a Digital Sherpa™ Help Desk at well known cancer centers.

Cancer patients or care partners who express a desire to become more competent in Internet and social media skills will meet with college students who have been specially trained as Internet “Sherpas”. The students will offer help to find support and informational resources online and may include the following:

  • Information about their disease and other health resources
  • How to get help to become a self-advocate
  • Where to connect with other patients
  • How to become more tech-savvy

Please check out the video below that was produced from our pilot program.

Digital Sherpa™ Program from Patient Empowerment Network on Vimeo.

2018 Outcomes

In 2018, we carried out this program in partnership with Moffitt Cancer Center and Cancer Support Community, and the infographic below highlights some of the achievements of the Digital Sherpa™ Program.

 

Cancer Support Community Helpline

The Cancer Support Community is an international non-profit organization dedicated to providing support, education and hope to cancer patients. CSC’s website has a wealth of information and resources available, including links to advocacy organizations, online support groups and discussion boards and a Cancer Experience Registry where you can obtain information about your specific cancer and help with research in that area. CSC offers a wonderful service to cancer patients:

Cancer Support Helpline®

Whether you are newly diagnosed with cancer or a long-time cancer survivor or caring for someone with cancer, or a health care professional looking for resources, CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 9 pm ET.

You are welcome to call anytime.  If you receive a recording, please leave your name and contact number and one of our counselors will call you as soon as possible.

Please call 1-888-793-9355 and a CSC Call Counselor will be happy to assist you with any of the following concerns:

  • Information about local, regional, or national resources
  • Finding a Cancer Support Community program near you
  • General information about the Cancer Support Community and its services (in-person, online and by phone)
  • Help in talking about some of the emotional and social worries that cancer sometimes brings into our lives
  • Information about, and assistance in, ordering Frankly Speaking educational materials
  • Help finding a nearby support group, online support group or discussion group to connect with others
  • Short-term cancer counseling and emotional support
  • Open to Options™ treatment decision support counseling
  • Make a donation to the Cancer Support Community
  • Access to CancerSupportSource™ online distress screening program
  • Live web chat available during call center hours – CLICK HERE TO CHAT NOW!

 

Disclaimer

The Cancer Support Community provides this information as a service. Publication of this information is not intended to take the place of medical care or the advice of your doctor. The Cancer Support Community strongly suggests consulting your doctor or other health professional about the information presented.