Fwd: [SPM-MEMBERS] Giant lead forward for patient rights! Guiding Principles for Protecting Privacy and Building Trust

Peggy Zuckerman peggyzuckerman at GMAIL.COM
Sun Jan 10 05:35:47 UTC 2016

from  my other 'home', the Society for Participatory Medicine, please review
the following.   Without all the participants in the medical world working
in collaboration, there will be no true reform.  The notes in *bold *offer
a quick summation.
Peggy Zuckerman

---------- Forwarded message ----------
From: Sunnie Southern <sunnie at viablesynergy.com>
Date: Sat, Jan 9, 2016 at 8:26 PM
Subject: [SPM-MEMBERS] Giant lead forward for patient rights! Guiding
Principles for Protecting Privacy and Building Trust
To: SPM-MEMBERS at lists.participatorymedicine.org

Dear Fellow SPM Members,

If you haven't had a chance to read the newly released Guiding Principals
for Protecting Privacy and Building Trust supporting the President's
Precision Medicine Initiative, I highly recommend it.

To me, it is a giant leap forward for patient rights.  It is clear that our
dear CTO, Susannah Fox and Maya Uppaluru are having an impact in Washington.

Looking forward to your thoughts.


*Guiding Principles for Protecting Privacy and Building Trust*

The White House is unveiling final Privacy and Trust Principles for the
Precision Medicine Initiative (PMI). The principles provide broad guidance
for future PMI activities regarding: governance; transparency; participant
empowerment; respect for participant preferences; data sharing, access, and
use; and data quality and integrity. The principles articulate a set of
core values and responsible strategies for sustaining public trust and
maximizing the benefits of precision medicine.

Read the summaries below or read the whole report here

*  Creating a dynamic and inclusive governance structure*

*  Building trust and accountability through transparency*

*  Respecting participant preferences*

*  Empowering participants through access to information.*

*  Ensuring responsible data sharing, access, and use*

*  Maintaining data quality and integrity*

Sunnie Southern
Founder and CEO, Viable Synergy, LLC
Sunnie at ViableSynergy.com
w:  ViableSynergy.com
w:  Innov8forHealth.com
Twitter:  @SunnieSouthern
Twitter:  @Innov8forHealth


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