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Translating Evidence Into Policy Using Media, Quality Organization and Professional Societies t0 Deliver Messages to Policy Makers

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Title: Translating Evidence Into Policy Using Media, Quality Organization and Professional Societies t0 Deliver Messages to Policy Makers


1
Translating 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

2
An 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

3
Outline of What I Will Emphasize
  • Need to create a fertile environment for
    influence
  • Need to identify playmakers
  • Need to communicate effectively good story

4
Content 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

5
Risks 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
8
Some of our data


9
Some of our data


10
Summary 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

11
Why 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

12
Fixing 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

13
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
  • 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

14
Timing 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

15
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

16
Purpose 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

17
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 ,

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
21
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 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

22
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

23
Communicating 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

24
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
  • 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

25
Smith-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)

26
McCollough 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

27
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

28
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 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

29
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

30
Seizing 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

31
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

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

33
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
  • 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

34
Other 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

35
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

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
37
Planning 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

38
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
  • 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.

39
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

40
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

41
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
  • Project 4 Cancer Risk
  • Scientific and Lay Audience

42
Multidisciplinary 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

43
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 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

44
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
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