About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Posts (6)

Dec 3, 2013 · Mayo Clinic's Social Media History

Good to see your enthusiasm, Jessica. Perhaps you can also share it with the Phoenix PR Pros group too. There are many of us doing exciting work in healthcare social media, and I look forward to your organization joining us.

Nov 18, 2013 · Annual Meeting Twitter Activity in 2013: Four Professional Societies

The ASH hashtags were very helpful last year and I’m looking forward to using them again in December. Matt and Mike, do you think they will get greater use this year?

Jun 15, 2013 · Ending Twitter Impersonation

Thanks for sharing this information, it’s very helpful. I’d like to share another example of impersonation – a growing trend among teens influenced by a Taylor Swift song about a child dying of cancer. Some are using creative writing skills to develop blogs about non-existent children dying from cancer, hijacking photos of real children, hospital names and more. One such blog was among the top ranked search results for children with a rare form of leukemia (CML) until a mom whose child had the same condition noticed discrepancies which led to outing the 17-year-old girl behind the blog and getting the blog taken down. That story has been picked up by media including the Today Show.

Mar 6, 2013 · Fake patient profiles on social media requesting donations in Give & Get Advice

The problem is growing, with imposters also infiltrating online patient support groups. Some are seeking funds, others are faking illness for attention. Several women have formed a group which investigates and outs people doing this, and have been covered recently by media including ABC News. Group leader Taryn Harper Wright, a Chicago commodities trader, said they basically notify the scammer they have been discovered and ask them to stop, and that often there is a mental issue and counseling is recommended as well. You can find more information here: http://abcnews.go.com/blogs/technology/2013/01/warrior-eli-hoax-busters-6-tips-to-spot-online-hoax/

Feb 19, 2013 · The "Right" Length for Health Videos

You’re welcome! And as an Arizona resident who works closely with the MPN community I would add that Dr. Mesa’s annual updates are highly valued by those living with myelofibrosis, on a worldwide basis, as well as by medical professionals who treat MF, and 14 minutes is not too long. 🙂

Feb 19, 2013 · The "Right" Length for Health Videos

Thanks for this topic, Lee. I was a health communications pro who focused, like most do, on short videos, until I was diagnosed with a life-threatening illness in 2009. A long video interview from a national expert in my condition, from a major medical conference, provided the most current information, and more targeted information, than the hospital where I was treated or my local medical team. I now work with the company where I saw the video, PatientPower.info, and with patients with many types of serious conditions and major medical centers, such as MD Anderson Cancer Center, which focus on providing in-depth information directly to patients.

One trend that has been underway for several years now is patient advocates going to medical conferences with their own video cameras and crews to bring new data back to the patient community. I wrote about this in 2010: http://www.empowher.com/cancer/content/lights-camera-action-patient-reporters-are-empowering-others?page=0,0

When your life, and/or quality of life, is on the line, your need is for substantive information, and that often takes more time. Another factor is that your state of mind changes when you’re diagnosed with a serious condition, and you may need to view the information several times to absorb it. You also need ways to share your situation with others who are supporting you. There is a tremendous need for educational videos that address serious medical conditions from the patient perspective rather than the short, promotional videos that too often offer no more than basic, encyclopedic data that is far too often out of date. Patients fill in the information gaps by joining online support groups, and in many cases are influenced by other patients in the choice of doctors and hospitals that can provide the best treatment. Providers that want to distinguish their offerings, and build trust with patients, would do well to conduct focus groups with us and hear from us directly to better meet our needs. What we say just may surprise you!