Title: Translating Evidence Into Policy Using Media, Quality Organization and Professional Societies t0 Deliver Messages to Policy Makers
1Translating Evidence Into PolicyUsing Media,
Quality Organization and Professional
Societiest0 Deliver Messages to Policy
Makers
- Rebecca Smith-Bindman, MD
- Professor , Radiology and Biomedical Imaging
- Epidemiology and Biostatistics
- Obstetrics, Gynecology and Reproductive Sciences
- University of California, San Francisco
- Director, Radiology Outcomes Research Laboratory
2An Accidental Health Policy Maker
- My research has 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 quality - I was invited to share my experience of using
research to influence policy
3Outline of What I Will Emphasize
- Need to create a fertile environment for
influence - Need to identify playmakers
-
- Need to communicate effectively good story
-
4Content of ResearchSafety of Medical Imaging
with CT
- Most medical imaging tests use ionizing radiation
- Exposure to ionizing radiation increases risk of
cancer - The dose associated with CT are much higher than
conventional x-rays 500 times higher - Thus the risks of CT are much higher than x-rays
- The use of CT is rising rapidly, thus increasing
populations exposure to radiation and cancer
risks
5Risks Associated with Radiation Good scientific
foundation of harm
- A large body of epidemiological and biologic
evidence links exposure to radiation with
development of cancer - The U.S. National Academies of Sciences
Biological Effects of Ionizing Radiation
Committee (BEIR VII) Conducted an exhaustive
review of the literature - They concluded that radiation in the range used
in medical imaging (at least with CT) are
carcinogenic - It is estimated that 2-4 of future cancers are
from CT - Brenner NEJM Berrington de Gonzales Archives of
Internal Medicine
6 Assessment of the Doses Used in Routine CT
Smith-Bindman, Arch Intern Med 2009
- 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 -
7 Mean and Range of Effective Dose Across
FacilitiesSame Study Indications
Site 1 Site 2 Site 2 Site 3 Site 4 Range
HEAD
Routine Head 3 3 2 3 2 .5-6 mSv
Suspected Stroke 18 18 15 8 29 4 - 56 mSv
CHEST
Routine Chest 5 5 12 11 7 2 - 24 mSv
Suspected PE 8 8 21 9 9 2 30 mSv
ABDOMEN
Routine 12 12 19 20 12 4 45 mSv
Multiphase 24 24 35 45 34 6 90 mSv
Smith-Bindman, Arch Intern Med 2009
8Some of our data
9Some of our data
10Summary of ResearchDoses from CT High and
Variable
- Dose from CT higher than cited
- Doses highly variable
- The risk of cancer from a single test is as high
as 1/100 - The doses are much higher than they need to be
11Why Are Doses So High and Variable
- Few data on practice
- No dose targets set for CT
- No quality standards exist
- No professional or governmental group responsible
for collecting or reporting dose - The US contrasts with other countries
-
12Fixing Radiation Safety in the USCase for this
being a Health Policy Issue
- Imaging is big business and industry has not been
willing to take on this issue its 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 wont (or havent) fix
itself - There is a model of government oversight in other
countries - There is a precedent of government oversight of
radiation in mammography
13Publication
- 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 - I was able to use this to help education the
public about broader systems based issues around
CT safety - The issue in the news was different from the one
I cared about
14Timing of our Research Provided Opening to
Communicate with Policy Makers
- Cedars Sinai reports of radiation overdoses
associated with the use of brain perfusion CT - NY Times articles by Bogdanich uncovering
radiation overdoses from radiation oncology
treatments for cancer - Our paper describing variation in dose, and
higher than needed dose, came at a time of high
interest/ public concern
15Creating 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
16Purpose of Communicating with Media
- Reported 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 -
17What 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 ,
18 Avenues for Influencing Health Care Quality
and Policy
Professional Academic Societies ACR, RSNA,
ABMS
FDA Regulation and Oversight
Research Direct Scientific Influence
Legislation National State
Industry
Payers CMS
Commissioned Research IOM, National Academies,
US Preventive Task Force
Quality Organizations National Quality Forum
Integrated Health Care Plans
19 Avenues for Improving Health Care Quality
Professional Academic Societies ACR, RSNA,
ABMS
Integrated Health Care Plans
FDA Regulation and Oversight
Research broad range of forums
Legislation National State
Industry
Payers CMS
Commissioned Research IOM, National Academies,
US Preventive Task Force
Quality Organizations NQF, Joint Commission
20 Media Provides an Ideal Medium Across All
Possible Groups for Influencing Care Quality and
Policy
Professional Academic Societies
FDA Regulation and Oversight
Research
Legislation National State
Industry
Payers
Commissioned Research
Quality Organizations
Integrated Health Care Plans
21Possible 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 Groups that were relevant to my area
- Congress Staff and Legislators
- Executive Branch FDA
- Quality Organizations NQF, Joint Commission
- Payers CMS
- IOM
- Professional Societies, NIH
- Industry
22Playmakers 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
23Communicating with Legislators and Staff
- Message straight forward
- Why should they care about your view
- - alliances allegiances useful
- - a single researchers view less effective
- Becoming a reliable source of information as a
knowledge broker is a win-win You become
someone to trust
24Speaking 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 - How I approached opportunity
- Message was simple
- What is the problem Why is this a health policy
question - Recommendations about what needs to be done
25Smith-Bindman Testimony
- Explained issue in clear terms
- Number of people exposed high, risks potentially
high - Oversight fragmented regulatory environment
-inadequate - FDA has some role, but not enough to fix this
problem - Professional societies have done little, and
difficult to do - Some standards exist for quality, but few and
not monitored - What Needs to Happen to Improve the Safety of CT
Imaging - Legislative oversight should broaden
- Quality Standards need to be developed
- Improve FDA oversight
- Public Reporting
- Create Consortium to study this issue (plug for
more research)
26McCollough Testimony
- Extraordinarily detailed showed busy power
point slides - Went into subtle nuance, without clear message
- She expected her role as a respected scientist to
convince the legislators that they should trust
that the issue was already being taken care of by
professional societies and that there was no need
for involvement of the Congress - She was rebuked by one of the Congress woman who
said she was clearly smart, but ill informed
regarding safety
27FDA 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
28Influencing 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 yet 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
29The 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
30Seizing Opportunities
- I had never heard of the National Quality Forum
- They approached me to be on their expert 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
31NQF 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
-
32 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 trying to have them adopt a measure that
will cover dose and other aspects of radiation
quality
33Other 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 - 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
34Other Stakeholder Collaborations Ongoing
- Industry
- They have the most to gain / lose
- I have met with several to help design
projects to lower dose - Collaborating with dose software companies
- Professional Societies
- Serve on ABMS-ABR-ACR, committee to design safety
metric. - Served on a large number of committees ICRP,
NCRP, CMS - Payers
- Joint Commission
-
35Ongoing 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
36 Avenues for Improving Health Care Quality
Professional Academic Societies
Integrated Health Care Plans
FDA Regulation and Oversight
Research broad range of forums
Legislation National State
Industry
Payers CMS
Commissioned Research IOM, National Academies,
US Preventive Task Force
Quality Organizations NQF, Joint Commission
37Planning for Translation
- Its 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 dont 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
38How 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 - 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.
39Planning for Translation Think about Stakeholders
- Practice Organizations
- Professional Societies
- Quality Organizations
- Policy Organizations
- Media, Public Relations, Patient Representatives
- You may need to think creatively
40ARISE 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
41ARISE 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 - Project 4 Cancer Risk
- Scientific and Lay Audience
42Multidisciplinary Stakeholder Council
- Our Stakeholder Council Involves 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
43Translating 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 thats 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
44Translating 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