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Two Communities
Research and policy worlds culturally distinct
Distinct language, timing, thought processes and values
Researchers tend to see decision making as an event-they deliver their edicts to the impenetrable cardinals’ retreat and await the puff of smoke that signals decision while grumbling about irrationality within the conclave
Decision makers tend to see research as a product they can purchase from the local knowledge store, but too often it is the wrong size needs some assembly, is on back order, and comes from last year’s fashion line
Media Can Cross the Divide
Can raise attention but it may not reach intended target and is rarely able to deliver specific solutions
More like a broad spectrum antibiotic that can sometimes work but also has a higher risk of untoward effects
Stakeholders Can Help to Deliver a Targeted Message
Working with Stakeholders[To Promote Your Messages to Policy Makers]
Rebecca Smith-Bindman, MDProfessor , Radiology and Biomedical ImagingEpidemiology and BiostatisticsObstetrics, Gynecology and Reproductive SciencesUniversity of California, San Francisco
Director, Radiology Outcomes Research Laboratory
An Accidental Health Policy Maker
My research had focused on outcomes research and HSR
Our publication on the radiation of CT coincided with CT overdoses at Cedars Sinai, and intense public interest
2009-2010 visiting research scientist, NCI, provided proximity to decision makers
Experience helped me see large number of ways to impact health care quality that were entirely new to be
I was invited to share my experience of using research to influence policy
Outline of What I Will Emphasize
Need to create a fertile environment for influence
Need to identify playmakers
Need to communicate effectively: good story
Content of ResearchSafety of Medical Imaging with CT
Most medical imaging tests use ionizing radiation
Exposure to ionizing radiation increases risk of cancer
CT uses doses 100-500xs higher than conventional x-rays
Thus the risks of CT are much higher than x-rays
The use of CT is rising rapidly, thus increasing population’s exposure to radiation and cancer risks
Assessment of the Doses Used in Routine CT
We conducted a study to assess the doses used for the most common CT examination types across 4 SF Bay Area institutions
The examinations were grouped by the reasons that patients were sent for CT
We found dramatic variation in doses within and between facilities, and doses that were much higher than widely known
Smith-Bindman, Arch Intern Med 2009
Mean Effective Radiation Dose for Common Study Types: Variation within Anatomic AreaSmith-Bindman, Arch Intern Med 2009
Risk of getting cancer as high as 1/100 from 1 test
Why Are Doses So High and Variable
Few data on practice
No dose targets set for CT
No quality standards
No professional or governmental group responsible for collecting or reporting dose
The US contrasts with other countries
Fixing Radiation Safety in the USThe Case for this being a Health Policy Issue
Imaging is big business and industry has not been willing to take on this issue – it’s a practice of medicine issue
Clinical practice groups have conflicting goals and incentives, and have not wanted to bring attention to this issue
This seems to be a problem where industry and professional societies won’t (or haven’t) fixed itself
There is a model of government oversight in other countries
There is a precedent of government oversight of radiation in mammography
Publication
Our paper was featured prominently in Archives, received widespread media attention
I and the media saw synergy with theme of radiation safety already in the news focused on over doses
I was able to use this to help education the public about broader systems based issues around CT safety
Timing of our Research Provided Opening to Communicate with Policy Makers
Creating a Fertile Environment for InfluenceMedia
The media were interested in learning more about the issues
Media has profound role in educating public and policy makers
Their interest was broad – and they wanted to understand the underlying issues (which are complex)
The more people aware of this issues, the greater possibility of having interested partners engaged to help create policy
I committed a lot of time educating media not just to get coverage for me and UC, but to broaden depth of interest
Purpose of Communicating with Media
Reports tend to be smart, good at conveying message
You need to help them by having clear, concise messages
Be responsive to different perspectives, and tailor your explanations to their interest: $, safety, turf, quality
Discretely help press know who to speak to, put them in touch with the playmakers –conversations will continue without you
Having media interest improves the medium of conversation among all relevant parties: Help Create a Fertile Environment
What Comes Next: Identifying Playmakers
Many different types of organizations have a role in shaping and influencing policy
They very much depend and rely on each other
Congress is particularly interested (?only interested) if the topic is important to their constituents, professional groups, consumer groups, the public
Avenues for Influencing Health Care Quality and Policy
LegislationNational &
State
FDA Regulation
and Oversight
Payers CMS
Quality Organizations
National Quality Forum
Professional & Academic
Societies ACR,
RSNA, ABMS
Research Direct Scientific
Influence
Commissioned Research
IOM, National Academies, US
Preventive Task Force
Industry
Integrated Health Care
Plans
Avenues for Improving Health Care Quality
LegislationNational &
State
FDA Regulation
and Oversight
Payers CMS
Quality Organizations
NQF, Joint Commission
Professional & Academic
Societies ACR,
RSNA, ABMS
Research broad range of
forums
Commissioned Research
IOM, National Academies, US
Preventive Task Force
Industry
Integrated Health Care
Plans
Media Provides an Ideal Medium Across All Possible Groups for Influencing Care Quality and Policy
LegislationNational &
State
FDA Regulation
and Oversight
Payers
Quality Organizations
Professional & Academic
Societies
Research
Commissioned Research
Industry
Integrated Health Care
Plans
Possible Playmakers In Radiation Safety
The more groups you speak to (and influence), the greater the cross talk –influence magnified
The more groups you speak to, the greater your legitimacy
The stakeholders that were relevant to my areaUS Congress: Staff and Legislators; California Congress
Executive Branch: FDA
Quality Organizations: NQF, Joint Commission
Payers: CMS
IOM
Professional Societies, NIH
Industry
Playmakers: Influencing Legislators
Staff are open to hearing from researchers
You are 1 voice among many – need to speak up to be heard
You need to communicate effectively: tell a good story
Communicating with Legislators and Staff
Message straight forward
Why should they care about your view
- alliances allegiances useful
- a single researcher’s view less effective
Becoming a reliable source of information as a knowledge broker is a win-win : You become someone to trust
Speaking as an Expert: Testifying at Congress
During discussions with staff, they asked about whether I thought it made sense to have a hearing
With no experience I said it could be extremely useful and agreed to participate
The hearing was going to be broad – all of radiation
Message was simple
What is the problem: Why is this a health policy question
Recommendations about what needs to be done
FDA: Current Regulatory Environment
FDA in charge of radiation safety
Responsible for approving machines , but no legislative mandate focused on assessing use in clinical practice
I found out where decisions are made, and contacted FDA
I felt they needed to expand their oversight- and I tried to get involved in brokering changes (FDA, Congress, societies)
I spoke several times –first on my initiative, and then on theirs
I emphasized the need for standards, and several recommendations – such as need for standards- were adopted into their subsequent White paper on Radiation Safety
Influencing Playmakers: Quality Organizations
Organizations at Cross Roads of Practice and Policy
I mentioned to Congress need for standards / public reporting
The FDA suggested “reporting” but not who should do this What should be reported and by whom?
I thought it should be FDA, but have not been successful
On a practical level there is a need for someone to write standards that can be used.
There are numerous organizations focused on setting, adhering to standards in medicine
The National Quality Forum (NQF)
NQF non-profit organization focused on improving the quality of health care
They set standards based on implementation of guidelines based on evidenced-base practice
Consensus organization (stakeholders, set priorities)
Endorse national standards for measuring and publicly reporting performances
Promotes reaching goals through education and outreach
Seizing Opportunities
I had never heard of the National Quality Forum
They approached me to be on anexpert review panel relating to a quality metric on mammography
I agreed to serve with intent of learning about their process with goal of submitting a metric on Radiation Safety
FDA decided public reporting would be good, did not have a way to do this, and using this parallel opportunity, I became knowledge broker
NQF Standards
When they adopt standards the impact may be large
The standard development process is grueling
The review process is also grueling: most “standards” rejected
Requirements: broadly applicable, easy applied, validated to be associated with quality and publically reportable
For my metric, I tried to engage support from ACR professional group
HPS scientific group
FDA executive branch
CMS
Several initiatives at CMS focus on quality, with consideration of measures that will improve quality and lower cost
As part of MIPPA (Medicare Improvements for Patients and Providers Act) CMS requires facilities in non-hospital settings to become accredited 1/2012 –
I am working with them adopt a measure that will cover dose and other aspects of radiation quality
Adding radiation safety to meaningful use would be a way to rapidly expand quality efforts
Creating Targeted Research Collaborations
In order to gain a larger voice, I have begun to partner with other groups
I submitted a small pilot grant across the five UC Campuses entitled UC DOSE
The project is focused on radiation safety and the partners are mostly physicists across the UC campuses
They have far more reach than I do in terms of influencing policy makers
The project is very much underfunded, and the bang we are getting for this collaboration in terms of influence (and actual work on standardizing doses) is immense
Other Opportunities
Each opportunity comes with the capacity to increase reach
The Institute of Medicine was commissioned to write a paper on environmental causes of breast cancer (Komen Foundation)
The feedback I received from congress was that to create laws, they needed to see interest from consumer advocates and larger stakeholders
When approached to write the back ground paper on radiation, I seized the opportunity
The IOM used report to conclude radiation most important environmental cause of breast cancer
Ongoing Challenges
The messages of my research / advocacy has not fully overlapped with all professional radiology groups
NQF experience disheartening
I continue to provided evidence from ongoing studies to support my (independent) views
I have also reached out the scientific community - related societies -to further shore up the science
UC DOSE grant – organized research project across the UC medical Centers that has organized physicists, and the UC weight, behind the safety agenda
Avenues for Improving Health Care Quality
LegislationNational &
State
FDA Regulation
and Oversight
Payers CMS
Quality Organizations
NQF, Joint Commission
Professional & Academic
Societies
Research broad range of
forums
Commissioned Research
IOM, National Academies, US
Preventive Task Force
Industry
Integrated Health Care
Plans
Planning for Translation
It’s never too early to plan for how you will use your research to influence policy
Ideal to think about from the time you write grant
You don’t know the results of your research but you know topic –hopefully better than anyone else- as well as the stakeholders you need to engage
Engage these stakeholders at the point of applying for funding
How Does A Busy Researcher Have Time
I was on sabbatical - unique opportunity
These activities take a time –as important as science
If you want research to have impact, this needs to be an integral and valued part of time
Funders are now explicitly requiring a plan
Resources to support these activities – investigator and staff time, need to be built into research proposals
This needs to be an integral part of research and thoughtful consideration of what entails, protected time.
Planning for Translation: Think about Stakeholders
Practice Organizations
Professional Societies
Quality Organizations
Policy Organizations
Media, Public Relations, Patient Representatives
You may need to think creatively
ARISE Program Project Grant
This grant focuses on many aspects of imaging: Appropriate Radiology Imaging for Safety and Effectiveness
Project 1 – Cost / Utilization
Project 2 – Effectiveness
Project 3 – Dose/Safety
Project 4 – Cancer Risk
The stakeholders for different projects are different
A dissemination and implementation plan is a significant and portion of project: several investigators involved
ARISE Program Project Dissemination Plan
Project 1 – Cost / Utilization
Payers, Health Plans, CMS
Project 2 – Effectiveness
Health Plans, Professional Groups, Quality Organizations
Project 3 – Dose/Safety
Health Policy Organizations, Professional Groups, Quality Organizations, Legislators, INDUSTRY COLLABORATORS
Project 4 – Cancer Risk
Scientific and Lay Audience
Multidisciplinary Stakeholder Council
Our Stakeholder Council Involved 25 collaborators who have all agreed to attend our annual meeting and conference calls
Practice based groups
Professional Societies
Quality Organizations
Policy Organizations:NCRP, FDA
Other: Patient Groups, Media
Translating Research Into Policy
The process of how to use research to connect parties and communicate results is separate from content
Need to work on research and impacting policy/practice in parallel
Need to have a message that’s relevant to policy decision makers , but if you do, this part of the research is the part that will lead to change in quality and practice
Translating Research Into Policy
Starts with clear communication
For me, previous research had focused on nuance, my research was presented in an easily understood fashion which helped
Luck / timing is necessary, but not sufficient
Need to take advantage of opportunities
Need to identify stakeholder and forge collaborations so that you can create a critical mass of interest in topic
Need to identify appropriate policy makers and figure out how to educate and influence their decisions