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Citizens’ Health Care Working Group Public Meeting

Thursday, July 21, 2005

Salt Lake City, Utah

 

Summary

 

Attendees

Members

Randy Johnson, Chair
Catherine McLaughlin, Vice Chair
Frank Baumeister
Dotty Bazos
Montye Conlan
Richard Frank
Brent James
Therese Hughes
Patricia Maryland
Aaron Shirley
Deborah Stehr
Christine Wright

Representing the Secretary, HHS

Michael O’Grady

Staff

George Grob, Executive Director
Jill Bernstein
Andy Rock
Caroline Taplin
Jessica Federer
Rebecca Price
Paige Smyth

Meeting Summary

Randy Johnson, Chair, began the meeting at 1 p.m.; members of the public were present.

James Johnston, a member of the audience, asked whether there would be an opportunity to comment on the proceedings. Randy Johnson explained that the meeting was a general organizational discussion among the Working Group members, that the following day’s hearing would be devoted to invited experts, and that the Working Group would be actively seeking public input and opinions beginning in October.

Report Committee - Report

Catherine McLaughlin, Chair of the Report Committee, indicated that The Health Report To The American People, required by the governing statute, needed to be available in different forms (English, Spanish, expanded format, accessible brief version, etc.). She reminded the Members that, at their meeting in Jackson, MS, they had concurred with the advice of the Committee to make the Report available in four different report formats:

  1. A complete, heavily documented on-line version with lots of tables and data with information provided from a number of different sources; research for this version had already resulted in over 100 different references. This version would be for interested individuals who really want to know more.
  2. A shorter, easier-to-digest version.
  3. A 25-page version more condensed than the online version that would be available in PDF format and that would present a full explanation. A draft was previously sent out to members of the Working Group (Attached) for consideration. Members’ comments were sought on this version so that staff and Committee members could spend the weekend beginning to revise this version. A small number of copies would be printed but the primary distribution would be through the Web site.
  4. A 10-page version that would be available on the web but would also be produced in quantity in hard copy. It would be very visual.

Discussion of Preliminary Draft 10-Page Report

Catherine McLaughlin indicated that she was seeking the Working Group’s advice on whether to scrap the present version of the 10-pager or to continue pursuing it. In response, Frank Baumeister indicated that it wasn’t clear whether the 10-pager would provide the story the Working Group wanted to convey and mentioned a book that could be a useful resource: “Visual Language.” Catherine McLaughlin indicated that this version of the report would represent visually where the money comes from (the people), how it flows through an administrative structure (currently represented as a building) and where it goes (providers, services supplies).

Michael O’Grady asked whether there were sufficient funds to pay for a focus group to try the draft document out on and indicated that while it was a nice set of graphics, a focus group would aid in testing how effective it was in conveying information. He indicated that some field testing of the draft document would be a good idea. He observed that the main content was lost in tiny type in the middle of the example being presented.

Randy Johnson asked whether there was the sense of the Working Group that a focus group should be used. Michael O’Grady responded that there are people who are experts and specialists in effective graphical presentations and he recommended seeing if there was a way to draw on their skills. A further exchange took place regarding the value of a highly visual version of the report, especially for individuals who would be disinclined to read longer report. Montye Conlan indicated that the draft 10-page booklet had too much information in print that was too small and difficult to read.

Patricia Maryland agreed that it would be desirable to get additional assistance on developing the visual presentation. Michael O’Grady indicated that if the service the Report Committee was receiving wasn’t satisfactory, that other assistance be sought; Therese Hughes expressed support for this suggestion.

George Grob indicated that staff would look into getting more assistance. He also observed that it wasn’t just a question of the pictures but also of the words accompanying the pictures. Summarizing the discussion, Dotty Bazos observed that assistance was needed with the total package, including graphic artists who can help with the content as well.

Christine Wright offered to provide information regarding an instructional series by “Krames” that she had used for years in the hospital setting; this series of booklets had successfully explained topics as complex as osmosis and diffusion to patients with kidney failure.

Richard Frank pointed out that the 25-page version of the report would meet the statutory requirement of having a report by the end of August so that maybe the Working Group could allow itself more flexibility regarding the timing of the shorter version in order to produce an effective product for general consumption.

George Grob suggested that what would be needed for the community meetings was a video 5-10 minutes long to be used by the presenter, along with some slides, to explain the purpose of the statute. The video could be used as the basis for both community and for web cast meetings. That kind of a video could, and needed to be, produced during the next several weeks in advance of the community meetings. George Grob indicated that he could imagine a person reading off the 10 lead ideas with pictorial representations as the basis for this video. If the story could be outlined and written, then this could be turned over to a company to prepare material that could also be turned into a document for distribution.

The video, along with the slide show version of it that people could down load from the Web site is probably what would be used at all the community meetings. The 10-pager should be used to assist in producing that video. An appropriate version of the slide show/video could be printed; in other words, the printed version could be derived from the video and slides and could then be broadly distributed. Through a contract, the appropriate company could provide a nice visual if the Working Group Members and staff could provide the intellectual content, in the form of a draft slide show presentation. Michael O’Grady agreed with this approach adding that, before all the money for this area was spent, the story line could be tried out in the form of story boards to make sure it worked. He also recommended asking the firm to link the video on the web.

Catherine McLaughlin summarized the direction of the discussion as that the Working Group now saw the 10-pager as an end product rather than the starting point so that Report Committee members could now concentrate on getting the 25-pager right. She expressed concern, however, that the number of people who see the video on the internet will not be that large and that a visual that can be widely distributed via Costco, for example, and other mass vendors, was still needed. She didn’t consider that a video or slide show could substitute for the 10-pager. Montye Conlan agreed that the 10-pager that is visual and accessible is needed and that more work was needed to achieve this.

George Grob agreed and indicated that what doesn’t “jump off the page” currently is the story. He suggested that the story needed to come first in the form of a short highly graphical version that people could walk away with. The story board version of the report, the slide show, would be designed to carry the message; he indicated the need to seek help to display this story in various formats.

Richard Frank reiterated that the 25-page report is the main story and that everything else should stem from it.  The Report Committee should work hard at what they were good at – getting the 25-pager right, and then buy the expertise to assist in telling the story in different ways. Therese Hughes added that it was important that the story portrayed by the contract eventually chosen should be what the Working Group agreed it should be.

Discussion of the Draft 25-Page Report

Montye Conlan indicated that she liked the tone of the draft 25-page report and its simplicity and clarity. The draft report methodically went through important information step by step and had an appealing ending.

Patricia Maryland agreed but expressed concern regarding references (on Page 27 of the draft 25-page report) citing the work of Ginsburg and Blumenthal. She wasn’t sure the information accurately reflected the general consensus of the field and didn’t feel that this section represented very well what can be done. She was also concerned about a balance in terms of explaining what is driving costs up; more than just hospitals needed to be identified as the source of higher costs; for example, pharmaceuticals also needed to be included.

Richard Frank commented that Ginsburg and Blumenthal weren’t presenting original research but rather summarizing findings from the field. Richard Frank also commented that there is a lot of research regarding the differences between the United States and other countries: our country pays hospitals, doctors, and other health care providers more; the numbers of services aren’t different, we simply pay more. Christine Wright wasn’t sure where everything came from in this latter portion of the draft report. When she got to the section regarding what can be done, she wasn’t sure where the options mentioned came from. Catherine McLaughlin said that an easy way to accommodate the concerns that Working Group members were expressing would be to add text that indicated that there are other approaches to addressing what the health care system needs.

Michael O’Grady indicated he was skeptical about using the personal stories at first, but they seemed to work. He liked the report over all. There were some small fixes needed here and there: there was a bit too much from advocacy groups and the report needed to stay with neutral sources, such as census bureau data. The beginning of the report was good; it indicated there were a number of problems. There were a number of references mentioning that the United States spends more than other countries; however, there was no indication that other countries may achieve cost savings by actions such as stopping construction on hospitals or accepting long waiting times for services. Our costs are also higher because we have more nursing homes.

Richard Frank said that the draft report didn’t address the cost control problem. Maybe it needed to discuss the pressing problems; this could be presented objectively and the report could stop short of suggesting solutions. Randy Johnson reminded the members that they would be hearing more the following day (July 22) from a number of experts on some of these topics; this information could further inform the report.

Michael O’Grady observed that during the past 25 years, innovation and improvements have come from employers, insurers and others. All the ideas are not coming from the academic community although much of the literature about what is happening comes from this source, where the manner of communicating and implementing ideas is to write journal articles. Catherine McLaughlin commented that the Ginsburg work cited is based on first hand visits to a dozen communities. Catherine indicated that she understood the Members to be saying that the Report needed to more accurately reflect the field of reporting on the current conditions and be non-prescriptive at this stage.

Therese Hughes expressed the opinion that obesity would be a better and more significant example to provide of causes of cost increases, on page 27, than to use transplantation. Catherine McLaughlin agreed to get another example.

Richard Frank added that the report needed to explain more clearly to people why they need to make trade offs. The report should underscore the importance of the need to solve the problem of cost increases. The three options available are to: affect prices; modify quantity; or address fraud, waste and abuse.

Brent James stated that there was robust research supporting the contention that from 25-40% of total health care costs represented unnecessary costs resulting from lower quality of care. He indicated that research has shown that people in Florida consume 2.5 times more resources than people in Minnesota; and that’s not the extreme example. Elliot Fisher’s work showed that we get worse medical outcomes with increases in resource consumption and that we’re seeing 40% over-consumption of health care resources and worse outcomes. Richard Frank stated that he believed that some of this usage reflects affirmative health care preferences, not necessarily obvious waste. He indicated that this raises the question: “can we afford those preferences?”

Brent James responded that that’s not the case. He had just seen data indicating that patients make different choices when presented with the same data that physicians have used when the latter make decisions to practice more aggressive care. Provided the same information, patients tend, in 40-60 % of the cases, to choose less aggressive care. As a physician, he was troubled by this data because it suggested that physicians are pushing more aggressive treatments on patients than the patients themselves want or would choose if given a fair choice. Randy Johnson said he’d seen similar data and, regardless of whether it is waste, it suggested that we can reduce costs and improve quality by providing more appropriate and desired, care. He hoped that the report would reflect all the information received from the hearings the Working Group was holding.

Michael O’Grady reflected that the report could also go broader, indicating that the choices were: “do you want more Government-based approaches or do you want more market-based approaches?” A part of what the Working Group is trying to do is give someone who doesn’t spend all their time on this, enough information and choices in order to have some basic information about what the options and issues are. This information should be in the report so that while people are trying to understand the choices being presented, they are given sufficient information to begin to understand their choices. Of course there are also the questions of who’s paying, who’s consuming, and who is subsidizing whom.

Brent James asked whether the intent was to pose a question about whether one approach is more rational than another. Michael O’Grady responded that, no, the report should describe the different approaches; it shouldn’t patronize or condescend to the reader but provide an explanation of the basic options or premises on which other, more specific choices could be made. The report should be straight with the American public. Richard Frank suggested that the report could put it in terms of indicating which of the different approaches that have been used emphasize a government-based approach and which emphasize a market-based approach.

George Grob posed a framework for how to proceed. The report is now set to be released in early October and Community Meetings to start soon thereafter. Because they come so close together, the Community Meetings materials are needed by the time the report is issued. The web site will be turned on the day the report is issued. That same day, people will be asked to go on line or call and tell us their opinions on several questions; it will all need to be ready at the same time.

A key question is whether to pose the large questions for which the Working Group is seeking answers during the community dialogues at the beginning or at the end of the report. George Grob indicated that he had believed work on the survey research needed to be done immediately and then figure out where to place the questions. He also indicated it was necessary to figure out the presentation immediately that would be used later.

He thought the report was excellent, but agreed with the comments the Members had made regarding the need to make further changes in the draft, especially the ending of the report. The last section of the draft began describing whether we were getting our money’s worth and then switched to a question about what we can do to improve the health care system. He suggested that another chapter was needed, that the content needed to be expanded. All sections of the report could be well served by telling what people were trying to do to address each issue in the report; what various people were doing to trying to address access, quality and efficiency. Then the report arrived at the great divide, where it asked some closed ended questions. A bridging section was needed to move to the last section asking the questions.

Michael O’Grady observed that what is unique about the Working Group is that it is going out to others. He expressed concern about giving too much about what others have done. He indicated that he was more comfortable helping move people up the learning curve. He suggested that the report talk about price, quantity, quality; indicate that there are large divides, and then stop there—not narrow down prematurely how the public should respond since the report might send people down the path that is already known and prevent the Working Group from hearing new information and ideas.

Regarding a question about the relation between the Department of Health and Human Services and the role of the Working Group, Michael O’Grady observed that he considered the Working Group to be an independent process. Congress set up the working Group, not the Department. Staff at the Department would work collegially, providing fact checking. Michael O’Grady confers with staff at the Department, but otherwise he assumed that the Working Group will proceed on a self-directed basis.

Richard Frank observed that the personal Working Group member stories in the draft report could be used more effectively than they were, maybe placing them in proximity to appropriate sections of the report. He also indicated he’s was uncomfortable about the administrative piece because the draft report implies that it’s pure waste. His overall impression from that section was that it was still not quite balanced and that it was too easy to point to potential administrative savings as a “freebie.” Michael O’Grady agreed, commenting that low administrative costs might imply low service levels.

Catherine McLaughlin reflected that since the 10-pager may go away, the quotes could go into the 25-pager, but that would make the report larger; the Report Committee had thought of the two reports as complementary. There was general discussion and consensus among the members that the 25-pager is the full document and the 10-pager is a brief version; so everything should be in the 25 page document. Randy Johnson commented that the report committee would like to see written comments from everyone.

George Grob suggested that the 25-pager should be treated as a stand-alone document and it should be made the best report it could be, without regard to any other documents. Then things could be drawn from it or expanded upon in other products.

Michael O’Grady concluded by reiterating that the thing that made this group unique is the charge that it not simply consult with the existing experts but that it would go out and seek a dialogue with the citizens and try to identify what they wanted, what their preferences were and what they believed the trade offs ought to be. So he cautioned about trying to go too far in this first report in providing ideas about what the solutions should be.

Community Meetings Committee Report

Aaron Shirley, M.D., Chair of the Community Meetings Committee, distributed copies of a CD on which were recorded the health care blues song created by a retired research chemist in Jackson, Edgar Smith, who enjoys creating music as a hobby.

Aaron Shirley indicated that the consolidated Working Group budget, prepared by the Executive Director, included substantial sums for community meetings. The Committee still needed to discuss how many of each kind of meeting ought to be conducted. Aaron Shirley expected there to be about 150 people at each of the community meetings; innovative ways to conduct these meetings would be sought. The meetings would need to accommodate individuals with special needs. In addition to the highly structured larger meetings, smaller meetings for special populations could also be implemented. One of the options being explored was using the United States agriculture extension service network in Mississippi. This would make it possible to link video among several sites. Aaron Shirley indicated that he believed the extension service was going to provide a demonstration of this capability.

Michael O’Grady found this possibility exciting and mentioned he thought that Arkansas and others might have a similar capability. The idea of sponsored meetings was also good; especially if the sponsors were essentially neutral, and not promoting the meetings for their own purposes. Corporate sponsorship for that reason might be more complicated. Catherine McLaughlin said that the main emphasis of community meetings was the opportunity for Working Group members to interact with community members. She expressed that the budget might assume too many structured meetings. She wasn’t sure that so many of these meetings were needed and asked when the Working Group members would have informal, voluntary, self-selected participatory meetings in which the members could simply go out and talk to people. Montye Conlan indicated that the committee hadn’t had discussions about this yet. Aaron Shirley indicated that this would be discussed at the next committee meeting.

Frank Baumeister commented that he had explored what had been done in Oregon. Subsequent to organizing and holding meetings across the state, participants in the Oregon effort participated in forming American Health Decisions, an organization that includes members from 17 states, all interested in exploring how to provide better health care coverage to their citizens. These people were a possible resource and partner in Working Group efforts.

There was a general discussion regarding the propriety and legality for the Citizens’ Health Care Working Group to either solicit or receive cash or in-kind support from other organizations. George Grob commented that staff had checked with Department lawyers and learned that cash could not be accepted; a certain amount of limited in-kind assistance like conference rooms can be accepted. What the Working Group could do was produce materials that would be easy for others to get so that anyone could take them and run their own meetings or activities. They could drive some audience via web casting or other means. Staff hope to encourage other groups in the country to go to the Working Group web site and encourage others to get our materials and use these materials and encourage their members to go online/telephone and provide public comment on issues the statute directs be pursued.

Michael O’Grady added that the question of accepting donations was important to the Working Group’s credibility. Having lived with ethics rules, there were two considerations: whether one is allowed to do certain things and second, the appearance of it. The Working Group needed to be careful to talk to neutral third parties about doing this sort of thing, not to major stake holders. USDA, as Aaron Shirley mentioned, is a possibility; delivery of health care is not even its policy area and it is another governmental agency.

Communications Committee Report

Dotty Bazos, Chair, Communications Committee, reported that her Committee was advancing press and media activities. She had recently made visits with staff or had phone calls with several potential messaging and public relations firms. She indicated that assistance would be sought from one or more of these to help refine the web site, create an effective slide show, clarify messages for the public, and obtain advice about outreach strategies. This assistance was especially needed around the important milestone events of the Working Group: release of the report, web site and survey launch, initiation of community meetings, issuing draft recommendations, and issuing the final report to the President and the Congress.

Michael O’Grady suggested the value of having as many different contractual partners as possible. Balance is very, very important so that it does not appear that the Working Group is being partial in any way.

Dotty Bazos indicated that the staff was doing a terrific job. Things were falling into place at the last moment, the Working Group members needed accept the idea that things would be a bit unsettled but that they were moving along. She indicated that the Executive Director and staff were working on the messaging concerns and thinking about what to do to get the word out, seeking interviews. Every month, Jessica Federer would be sending a packet of press clippings that would also go on the web site. Work to establish linkages with staff on Capital Hill was also underway. Messaging work would focus on major milestone events as well as on an ongoing “buzz.” Everyone interviewed was really interested and even offered to provide free or reduced cost service.

George Grob agreed that most of the media firms said the Working Group and staff basically had it right. They made the point that Patricia Maryland was making that the Working Group needed to extend its reach to other groups. More bang for the buck depends on how one can maximize relationships with others and use outreach to get others to assist us. Ongoing communications are also more important than “blow-out” PR events—and cheaper.

Richard Frank underscored the importance of attending not only to the legal questions but also to appearances, dealing with organizations that would be perceived as fair and unbiased.

Michael O’Grady commented that, regarding press coverage, it would be nice to provide editorial pieces that could come from the two Sponsoring Senators that reflect their bipartisan agreements concerning the issues at stake that the Working Group has been created to address.

Report by George Grob, Executive Director, Regarding the Draft Budget

George Grob described the budget in broad terms.

George Grob indicated that the Working Group has $2.9 million appropriated funds for FY 2005; $3.0 million has been requested but not yet appropriated for FY 2006. The latter amount is in the Senate appropriations bill; however, the House bill has nothing.

Michael O’Grady advised that the Working Group should have a back-up plan that assumes the House and the Senate split the difference and we get only $1.5 million for the second year.

George Grob commented that, in order to complete work on a final budget, there were several questions for which answers from the Working Group, collectively, were needed:

  • WG Meetings – How many meetings of the Working Group should we have? Each meeting costs about $50,000. The budget assumes the WG would meet every other month. But the Working Group needs to decide how often it wants to meet.
  • Staff – How many and what kind? Budget includes hiring one mid-level analyst and one beginning analyst. Also need was a whole or part of another person for PR/Public Affairs staff person as well as drawing on one or more outside firms.
  • Contractor Support – Potential additions are for community meetings, internet meetings, outreach management, interactive survey, toll-free telephone line.
  • Interactive Community Meetings – How many? Each costs about $50-80K.
  • Community Engagement – Many options: interactive meetings, sponsored meetings, self-initiated meetings, passive web cast, internet feedback, etc.

The Chair adjourned the meeting at 5 p.m.

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