communication strategy workshop
Post on 08-Jan-2016
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Communication Strategy Workshop
Goals for the Day
• Advance the communication strategies for individual research initiatives.
• Identify overarching strategies that we might share or coordinate together.
• Walk out of here with an action plan.
Post HeLa: People have questions
• Who is using my data/specimens? • Who decides?• Who is making money?• What will happen?• Who is going to benefit from this?• How will I know?
• Are we ready to answer them?
Why does communication matter?
• Public dollars fund our research. We need to be accountable.
We should build enthusiasm and support.
• Transparency can promote trust.We need to be accountable.
We do not want to surprise people.
Common Responses
• Don’t Ask, Don’t Tell• We’ll have our message ready when they ask• It’s too complicated to explain• People aren’t interested• We should only put our best face forward
Public Opinion
• 90% were concerned about privacy protections
• 60% would participate in a biobank if asked
• 48% would provide consent for all research if approved by an oversight board, 42% wanted to be asked for each
2008 public survey
N= 4659 (58.4% response)
Kaufman et al. 2009
Public Opinion 72% wanted to know about research being done with
anonymous samples; 81% with identifiable samples
• 37% of reasons for wanting to know about what research was done were curiosity-based.
• 57% would require researchers to seek permission, whereas 43% would be satisfied with notification only.
– Phone interviews 2002– 1,193 clinic patients
– Hull et al. 2008
PRIM&R
ASHG
It is ethically necessary to obtain re-consent from research participants prior to sharing a de-identified sample or data with an investigator at
another institution?% Disagree% Agree
Very/Somewhat
Re-Consent Prior to Data Sharing
Neutral
% Don’t Know
4612
4310
40
44
DKVery/Somewhat
3
3
n=199
n=346
Lemke et al, 2010; Trinidad et al, 2011
Changing Climate
Beyond Broad Consent
• How can we prepare someone to know how to respond when faced with a consent form?
– Busy clinic– Stressful clinical context– Attention and priorites are elsewhere– The situation is prospective and dynamic
“Some of my genetic information will be stored in some databases for some future uses.”
Comments: “Research doesn’t benefit me.”
Cautionary Tales Continue
What Can Help?
• Clear messaging – what are we doing and why
• Community Advisory Boards – input throughout
• Community Education – why this matters
• Transparent Consent Process
• Accountability for Data Use
• Transparency of Partners and Agreements
• Feedback loops built in – value is clear to all
What’s in a Name?
Theme for the Day
• Action-Oriented
• Concrete
• Path forward
• We all have a part
The Projects’ “Brands”
Washington Phenotyped Biospecimen Resource
The Projects’ Missions
Patient Procedure/ Visit
Tissue
Blood
Pathology
Lab Medicine
Residual Tissue
Residual Blood
Investigator
Institutional Review Board
Subject/Specimen
Query
De-identification
Honest Broker System
Information System
Authorization Status
•Logs•Reports•Invoices
Opts In & Authorizes
Use of Specimens
Specimen Inventory
EMR
Specimen Request
Specimen Delivery
Sample flowInformation flow
Permission System
WPBR
The Patient/Public’s Perspective?
What We Have in Common
• Intent to “Do Good”• Pursuit of Generalizable
Knowledge (Research)• Close Proximity to Clinical Care
(Fiduciary Relationships) • Data and/or Specimens from
Patients
• Who May Not Understand Difference Between Care and Research
Where We Differ• Types of Patients• Recruitment/Consent
– Locale– Timing relative to care
• Types of Data– Clinical only– Specimens, prospective– Specimens, discarded
• Data Retention and Sharing– Individual Investigators– Repositories– Academic– Industry
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