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

Alan Morris Alan.Morris at IMAIL.ORG
Sun Jan 10 12:36:42 UTC 2016

Thank you.  This is an important Presidential Initiative, but one that will not, as currently configured, achieve its goals.

I have led a 30-year program for development, validation, implementation and distribution of detailed computer protocols that enable replicable clinician decision-making and delivery of patient-specific (personalized) care instructions tightly linked to best evidence.  These personalized instructions are accepted and carried out by clinicians in multiple sites (USA and Singapore) 95-98% of the time.  We were funded by the NIH for this detailed protocol work for mechanical ventilation, blood glucose, and intravenous fluid management for intensive care unit patients.  We also use a detailed computer protocol replicable decision-support method to interpret of pulmonary function laboratory tests.  Feasibility is clearly established and results have been published.  The next step is scaling to large institution levels.  This could be achieved in 5-10 years with adequate funding, but such funding is not available.

The President's Precision Medicine Initiative "calls for a change in the culture of medical practice and medical research to engage individuals as active collaborators – not just as patients or research subjects" - a laudable goal.  It does not, however, include another essential element, required for success of the initiative.  It fails to identify the overtasked and overburdened clinician decision-maker who, because of human cognitive limitations, cannot consistently deliver the best care linked to best evidence.  Detailed computer protocols that enable replicable clinician decisions, tightly linked to best evidence, achieve this goal and therefore complement the President's Precision Medicine Initiative.  Funding for such protocol use in an expanded and scaled manner is not available, but is essential for achieving the goals of the Precision Medicine Initiative.

Alan H. Morris, M.D.
Professor of Medicine
Adjunct Prof. of Medical Informatics
University of Utah

Medical Director, Urban Central Region Pulmonary Function Laboratories
Pulmonary/Critical Care Division
Sorenson Heart & Lung Center - 6th Floor
Intermountain Medical Center
5121 South Cottonwood Street
Murray, Utah  84157-7000, USA

Office Phone: 801-507-4603<tel:801-507-4603>
Mobile Phone: 801-718-1283<tel:801-718-1283>

From: Peggy Zuckerman <peggyzuckerman at GMAIL.COM<mailto:peggyzuckerman at GMAIL.COM>>
Reply-To: Society to Improve Diagnosis in Medicine <IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG<mailto:IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG>>, Peggy Zuckerman <peggyzuckerman at GMAIL.COM<mailto:peggyzuckerman at GMAIL.COM>>
Date: Saturday, January 9, 2016 at 22:35
Subject: [IMPROVEDX] Fwd: [SPM-MEMBERS] Giant lead forward for patient rights! Guiding Principles for Protecting Privacy and Building Trust

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<mailto: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<mailto: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<mailto:Sunnie at ViableSynergy.com>
w:  ViableSynergy.com
w:  Innov8forHealth.com
Twitter:  @SunnieSouthern
Twitter:  @Innov8forHealth


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