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