#hcmn – The moving story of Zach

real time commentary from HealthCampMinnesota #hcmn

Rachele – loves telling the inspiring story of Zach. @AlbertMaruggi tracked Rachele down on Facebook.

Zach has a rare degenerative disease. He was perfect when born – life was good. At 18 months things starting going backwards.

The first concern of the pediatrician was Multiple Distrophy. He continued to regress.
The second neurologist took a look at the notes and sent them away for 6 months.

The pediatrician sent him back to the first neurologist.  Agreed something was wrong. Still no solution.

New doctors but no diagnosis.  a mis-diagnosis of cancer. 6 months of scans and no tumor was found.

Rachele started doing internet searches. Found a doctor in Illinois thought they found a diagnosis. but it turned out not to be.

Third misdiagnosis – myocondrial disease. A bad test led the doctors to advice he had a terminal disease.

After 5 years. INAD – for Zach it was ANAD.
the 6th MRI they found something. PCAN – 99% sure. But internet searches led Rachele to doubt the diagnosis.

Following the symptoms and pointed to INAD. Spoke to the Physician who had never heard of INAD.  The Gene that identified this disease was found. This confirmed: Infantile Neuro Dystrophy. Only about 100 people in the world. Most kids don’t live to 10. Only about 6 pkids in USA with the disease. His diagnosis is Atypical hence ANAD.

Navigating the Journey – Advice :
Pick your Quarterback. 
Helpful things:

– Laughter
– Don’t sweat the small stuff
– Friends 
– Faith
– Accepting help.

“It is never the trail it is what you choose to do with it that matters”

There is a lot of dubious information on the Internet.
Trust yourself and be persistent but don’t get obsessed.

Use the Internet 

Spread the story. Pass the smile on!

When you have a disease you have to realize you become the expert – above and beyond your physician. Patients and Doctors have to recognize this issue.

The Internet has been a huge resource for Research. Caringbridge has been a great support.

Rachele got annoyed with the “brush of” she received from doctors.

Coping with disease is a process. 

How about dealing with the insurance companies. Actually didn’t have many problems. Now in a disabled program. $6k/ month for a special IV but so far the IV is being paid for.

1 in 200k chance of 
 parents both having the same recessive gene.

#hcmn – American Idol Doctors

Real  time commentary from #hcmn HealthCampMinnesota

Panel moderated by Chris Bevolo, President of Interval (@IntervalChris)

BlueCross BluesShield Minnesota

TheHealthCareScoop.com leting consumers tell health related stories. Feedback and discussion

Tammy Young: (@ymmat)

Very focused on the customer narrative. The stories matter – it is trying to capture the personal word of mouth. 
HealthScoop has a 4 to 1 positive reporting. The positive is more passionate.

Chris Boyer @chrisboyer – Social Media Strategist From HealthGrades.com

Rating Doctors and Hospitals.

The internet is becoming a bigger influence than friends and family. 

Tammy: Narrative is more powerful than a simple rating. People can gain a sense from the language used.

The Site is community moderated. 

@chrisboyer Why do we know more about sport scores than we do about our health scores.

HealthScoop: Providers can participate on the site. Slow uptake. 

HealthGrades every hospital with medicare data. Some build a relationship, some don’t.

Data is sourced from Medicare. Doctor ratings will come from same source. Only 17 states report all payer data in a consistent manner.

When Hospitals pay for HealthGrade license to use the Grading. They also pay to get help in promoting and using gradings.

Health Grades has an annual summit to evaluate the interpretation of the data they are using.

Language differences:

Hispanic audiences use Family and Friends more. They also use internet less but mobile devices more. 

What is missing? 

The Audience: Quantitive data. 

Chris Boyer: State of NY reports quality. Quality improved after reporting started.

Minnesota has Quality Reporting: 

HealthGrades – their home page is no longer their home page. They realized people are going to Google to search and getting to HealthGrades specific pages from Google.

HealthGrades: Social Media is here to stay and is real conversations and not just “chatter”

CMS provides the information but people go to HealthGrades because it is more accessible.

How do physicians get in to the conversation: HealthCareScoop: enhancements 

#hcmn can device manufacturers benefit from Social Media

Real Time commentary from HealthCampMinnesota #hcmn

Patrick Kullmann (@growthcreator) moderating a panel on medical devices and social media.

Panelists:

– John Reid – Abbeymoor Medical (@theSpannerStent)
– Mary Halet – Regional Director National Marrow Donor Program (Registry of unrelated donors)

AbbeyMoor small company. Created a temporizing stent for men with Prostate issues

National Marrow Donor have 8m people on file with access to 5M others worldwide.

John Reid was very new to Social Media until the daughter of an investor suggested using YouTube and humor to raise awareness.
After stuggles with issues of professionalism. Within 24 hours of the first youtube video they went from 80 visits per day to http://www.thespanner.com to over 2100 unique visitors today.

The 18-21 year olds created a second wave of interest. The pass through to their elder friends and relatives creates awareness.

What the experience did is that if this connects people and raises awareness but the community will come up with answers. Encourage this community to share how they made decisions.

Fear of being a laughing stock. Actual impact has been amazing. It is now recognized by peers as a bold step.

NMDP – 2 full time staff on facebook and twitter. Uses Social Media to build roster of donors. Facebook fan page.

Have to be deliberate in creating concise and consistent messages. Staying out of conversation risks the message getting muddled and obscured.

Highly motivated and energized participants because Diseases are life threatening. Advances in treatment are being vetted in the court of public opinion. Taken deliberate space to provide transplant education. Provide credible resources for families.

Paul K: many Pharma and Medical companies are not listening to social media about what is being said about their own companies.

John R: Physicians are slow to adopt new technology. Don’t have resources for outbound marketing. Using innovative ways in Social Media to get physicians and patients to call them.