#PIPHCA – Reg4All Registries for all diseases @sharonfterry

Registries for all presented by @sharonfterry

Industry sponsored registries exist. Time consuming and costly to build.

We need people and their data.

Biomedical research and healthcare are laggin in entering the INFORMATION age.

Individuals are collecting information in a fragmented fashion.

Reg4All merges:

– Disease InfoSearch
– Trials Finder

Trials Finder enables patient registration. 
Enables self-reported medical information

A gamified survey 
– Common Data Elements – Measure in a consistent way across diseases.
– Add Disease Specific information.

Engagement is critical – but why will people engage?

Data Today for Solutions Tomorrow.

The question comes down to why will people engage and how will they trust this group?
Drive this from the disease advocacy organizations.

The unique element is to to add privacy controls via Private Access. https://www.privateaccess.info

“We try to do too many things with blanket access – We have to be granular and let people give permission” 

“People need to reclaim their health”

Go for all 13,000 diseases – the co-morbidity info will be astounding

The winners for this challenge will be announced on December 12th. – Watch out for it on: www.collaborateactivate.com or www.partnersinpatienthealth.com

#pphca – Partners in Patient Health – Flu Near You

Flu Near You – Vaccine Preventable Diseases remain an issue.

People distrust vaccines but because of their success people underestimate the impact of the diseases they prevent.

The CDC estimates that the Flu costs $10.4B each year in medical costs.

Participatory Health needs to engage the public in Public Health.

Participatory surveillance engages the public in monitoring activities.

Register by phone or web.Surveys received via email and take less than 10 seconds to complete.

Flu Near You helps you find sources for vaccine.

Flu Near You reports back on your local community. People like this local knowledge.

People like the mobile app. They like to be able to change location.

http://flunearyou.org

Already 9,000 users. Piloted in San Francisco. 80,000 surveys completed.

Partnering with LabCorp to enable local testing.

This app is designed to scale globally and to expand to other diseases beyond flu.

People find the map is invaluable. They like to interact with the map.

Initial engagement will be the challenge. One suggestion was to use the Boy and Girl scout organizations to drive family engagement. eg. a public health awareness badge.

Can people identify if they are in a high risk group? This done via Vaccine Finder where high risk groups are identified so that the right vaccine can be identified.

FluNearYou is different from traditional reporting methods. Traditional methods use reporting from HealthCare professionals. FlueNearYou offers earlier detection opportunities.

Puerto Rico is funding development for other diseases.

The real time aspect of this app really helps detection and treatment.

Collaborate | Activate Innovation Challenge 21st Century Braintrust

21st Century Braintrust presents a proposal for a PR campaign focused on Brain Health.

PR towards research community and also towards the public.

Promoting citizen scientists.
http://collaborate-activate.eventbrite.com / http://www.partnersinpatienthealth.com

Boomers are self-trackers. We are not looking to self-diagnose but to self-measure.

21st C Braintrust is about enabling apps to be able to measure Brain Health in the same way we measure physical health.

How do we normalize behavior that puts brain health to the fore. This is the opposite of tobacco cessation where the use of tobacco was de-normalized.

THe VA and the Sports Community are very interested in developments in this field.

How do we increase the scientific communities confidence in self-reported data.

21CBT is looking to establish standards that increase that level of confidence.

#Sandy response let’s help @unclenate / @healthcarewen /@faircaremd by Working together. It’s what we do.

Nate DiNiro is trying to pull together  some “digital volunteer” resources for #Sandy response; believe me that things are not completely under control.
Nate Has been working on coordinating crisis response to healthcare and long-term care since Friday. 

He could use some folks who can volunteer some time to curate resources, validate info, coordinate resources, etc… He has been working with Wen Dombrowski and Alex Fair to potentially coordinate come additional hackathons and a NYC CrisisCamp.

I am passing on Nate’s message and urging the HealthCamp community to see if we can get more volunteers…

Hey Friends,

Humanity Road is partnering with CrisisCommons to fulfill a request from Federal response agencies to collect operational status information from Hospitals and Long Term Care Facilities in areas affected by Hurricane Sandy. Please share your contact information if you’re willing to volunteer time to support maintenance of an up-to-date list and map of Hospital and Long-Term Care facilities.

Please email volunteersandy@crisiscommons.org if you have any questions… Thanks!

This information is being captured for the sole purpose of coordinating volunteers, it will not be used in any other way.


https://docs.google.com/spreadsheet/viewform?formkey=dFk2Nk5TZnhxanczZDk0YTJ5cUp5dkE6MQ