Patient-Centered Consent

http://sagebase.org

the odds of successful conversion to wisdom go up as more people can see the

code sharing a prerequisite.

http://synapse.org

accuracy of model jumped three orders of magnitude in nine days.

76% accurate.

the “portable legal consent” experiment

but…most don’t have data, and most who have data,

don’t have computationally useful data.

and “standards” are hard to come by in consent.

the patient-centered consent toolkit

provide open source methods and tools for

consent that outperform local methods and tools

1. series of interviews and requirements gathering

2. interaction design process and prototyping

3. software development

1. initial metaphor

2. initial design

3. post-workshop revision

implementation in 2 Sage Bionetworks clinical studies (parkinsons,

post-chemo cognition)

user interface to consent

informed consent document

map between form and interface

reviews for ethical and scientific propriety

reviews for effectiveness in informing

mobile clinical study protocoluse standard, vetted interface

and open source software code for consent

write locally appropriate consent forms

4. PD mobile study (IRB approved)

Sage Bionetworks Patient Centered Consent toolkit Beta release 10/2014 with EDM Forum

• design files • individual elements • screen compositions

• sample workflows • derived from PD and BCS apps

• boilerplate consent forms • legal text • mapped and annotated to design files

• software • code for “loop” for PD app as approved • implementation guidance

• FAQ • protocol design tips

Release Strategy !

• article in E-GEMS methods journal

• website with open source tools (attribution licenses)

• pre-committed beta testers (U. Washington, Cincinnati Childrens Hospital)

• public presentations through autumn (Stanford Ethics of Data, NIMH, CHoP, Broad Institute, Defrag, OpenCon, Partnering for Cures)

• social media promotion !

• liase with PRIM&R and others to smooth review of protocols using toolkit

Patient-Centered Consent

Health & Medicine

Patient Centered Primary Care Collaborative · erogers@pcpcc.net Patient Centered Primary Care Collaborative and the National Patient Centered Medical Home Movement Table of Contents

Developing a Participant-Centric Consent Process for …...the National Patient-Centered Clinical Research Network ... Aspirin Dosing: A Patient-centric Trial Assessing Benefits and

Patient centered care rvsd

Patient-Centered Care Improvement Guide - Planetreeplanetree.org/.../Patient-Centered-Care-Improvement-Guide-10.10.08.pdf · Susan Stone, RN, PhD October 2008 . ... The Patient-Centered

Student Health Center as the Patient Centered Medical Homenechaonline.org/wp-content/.../10/...the-Patient-Centered-Medical-Ho… · Patient Centered Medical Home Overview The Patient-Centered

Patient-Centered Care Requires Patient-Centered Insight ... · Patient-Centered Care Requires Patient-Centered Insight: What We Can Do To Complete the Picture [00:01] [Carolyn Wong

Progress from the Patient-Centered Outcomes Research ...€¦ · Progress from the Patient-Centered Outcomes Research Institute ... PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE

Patient-Centered Care Plans

Patient centered report

Participant-Centered Consent Toolkit Overview

Patient Centered Knowledge Translation:

The Importance of Patient Identification & Obtaining Consent · The Importance of Patient Identification & Obtaining Consent ... Case study 1 • A Nurse working ... patient consent

Patient Inform Consent

Patient-Centered Medical Home Initiative Breakout Session · Patient-Centered Medical Home ... • Development of personalized, patient-centered care plans • Team-based delivery

Person-Centered Design, Patient-Centered Healthcare

Patient-Centered Care:

Patient-Centered Consent Processo Evaluate the health literacy needs of the patient and family in the consent process. o Compare the standard treatment with what is being studied according

PATIENT-CENTERED CARE Annotated Bibliographyqsen.org/docs/Patient-Centered-Care-CONSOLIDATED...PATIENT-CENTERED CARE Annotated Bibliography Aled, J. (2007). Putting practice into teaching:

Patient-Centered Medical Home (PCMH) & Patient-Centered ... · 4/16/2015 · Patient-Centered Medical Home PCMH is a care model that strengthens the clinician-patient relationship

Providing Patient Centered Communication