The NCVHS Executive Subcommittee met on Thursday, October 29, 1998 in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
The Executive Subcommittee met for four hours. After hearing updates from the Department and each of the Work Groups and Subcommittees, they focused on planning for 1999 and beyond, addressing the following topics:
Three topics were the focus of brief substantive discussions:
Ms. Trudel reported that the comment periods have closed for the provider and employer identifier, and the teams are analyzing the comments. The health plan identifier is being reviewed internally, and a team is working on the NPRM for claims attachments.
Mr. Streimer added that the schedule has been revised, due to the volume and complexity of the comments. Staff work should be done by April 1999, and the final rules won't be out before the end of calendar 1999. Another, later "effective" date, when the clock would start, may be stipulated. This makes concerns about colliding with Y2K issues moot.
On the NOI on the unique individual identifier, the next step is a briefing for the Secretary, which has not yet been scheduled. The Department is studying the implications of Congressional restrictions in this area. The Department has done no work on the individual identifier since the Vice President's announcement. Dr. Lumpkin noted that one option is a voluntary standard.
The 105th Congress ended without acting on a privacy law. Mr. Scanlon reviewed the alternative courses of action possible in this area. Ms. Frawley said Congress still wants to take action in this area rather than leaving it entirely to the Department. However, the Department needs to move forward in view of the looming deadline. Ms. Greenberg noted that the Committee is on record as saying it won't do anything on the unique identifier until there is privacy legislation.
Dr. Detmer noted that the Committee's reorganization is working well. Mr. Scanlon introduced Gail Horlick, new lead staff for the Privacy Subcommittee. Dr. Eisenberg is naming someone to the Quality Work Group, probably Stan Edinger.
The group then heard Subcommittee reports and work plans for the coming year.
Dr. Lumpkin reported that key tasks for the Subcommittee are to study comments on the NPRM, monitor work on claims attachments, and move ahead on the computerized patient record. The Data Council has asked for hearings on enforcement, and the Subcommittee will also study the issue of standards in relation to surveillance systems.
In the last area, the group discussed framing surveillance as a joint project with the Subcommittee on Populations, which has scheduled a presentation for February. For the Standards Subcommittee, the implementation of the HL7 immunization record standard is a focus. Dr. Iezzoni noted that there are privacy implications as well, with some AMA members opposing the use of person-identifiable information for public health surveillance. It was agreed that Dr. Lumpkin will talk to Dr. Friedman to coordinate one or more presentations in February. Dr. Lumpkin noted the importance of giving this otherwise abstract issue "a face."
He circulated a document outlining plans for a hearing on December 8-9 by the CPR Work Group. Dr. Iezzoni urged that the nursing home industry be represented, and also that the work group vet its plans with someone who knows this arena, such as Dr. Mor. Ms. Frawley said she would convey to the Work Group the Subcommittee's recommendation that it include long-term care in its scope of work and forthcoming agenda, and that it consult Dr. Mor.
Dr. Lumpkin suggested that the Committee create a status of corresponding membership, whereby NCVHS members would receive information about the activities of Subcommittees or Work Groups of special interest but not be full members. The Subcommittee embraced this idea and will announce it at the November NCVHS meeting.
The Subcommittee plans in November to be briefed on the model state privacy legislation of the National Association of Insurance Commissioners. Its next activity, probably in February, will be to get together with a cross section of pharmacy groups. The Subcommittee will be available to the Department in respect to drafting of privacy regulations.
Dr. Detmer noted that the Subcommittee might want to respond to the GAO report on IRB restructuring.
Members expressed interest in a new joint report on privacy and confidentiality being released by JCAHO and NCQA.
Ms. Coltin mentioned issues she and Dr. Friedman have encountered around constraint of access to data for socially valuable research because of privacy considerations. Members agreed that it would be useful to pursue this topic. It was noted that a case study would be a constructive way to look at it -- possibly the one in which Ms. Coltin and Dr. Friedman are involved. No specific plans were made.
Dr. Iezzoni reported slow progress on a written report on Medicaid managed care, due to contractor issues. The Subcommittee's meeting on the islands and territories was very successful, and there will be a report on that as well.
The Subcommittee's next project will be on post-acute care, with the Work Group on Quality carrying out a sub-project in this area. The group will meet on January 22 to educate itself on this topic.
Dr. Starfield reported on work by her and Dr. Amaro, preparing comments on Healthy People 2010. The more serious deficit is in the data area. Recommendations will be prepared for review by the Subcommittee and ultimately for presentation to the full Committee, to be sent in a letter to the Secretary.
The Subcommittee met in September to study survey integration, identifying some issues that it will track. It also will be tracking OMB Directive 15 and the redesign of disability definitions by the Social Security Administration. In addition, it will work to keep data on the full continuum of care on the radar screen of NCVHS groups working on standards.
Ms. Coltin reported that to make the most of limited resources, the Work Group plans to identify subsets of work that are synergistic with the work of the full Subcommittee. For example, in regard to Medicaid managed care it will study data issues related to assessing quality of care. In the context of post-acute care, it will look at the data needed to assess and support quality. Finally, the Work Group plans to convene a panel of people doing quality measurement, to talk about what problems they encounter, what data they wish they had, and so on.
She agreed with Dr. Detmer that another area in which the Work Group could make a contribution is advising on the Patients' Bill of Rights -- particularly on how to collect information regarding plan compliance. NCQA expects to do something in this area.
Dr. Lumpkin noted the growing backlash in the industry against quality measurement, and Dr. Iezzoni pointed out a connected issue that she believes the Committee should discuss: the data mandates HCFA is imposing on health plans for risk adjustment. Some plans are threatening to quit Medicare rather than comply with the mandates, a trend the Committee should help articulate. She proposed a session in which the Committee would hear about the data issues around quality and risk adjustment from insurers, including organizations that perceive or have experienced the benefits of risk adjusting. After a brief discussion, it was proposed that such a forum be incorporated, with other topics, into a hearing sponsored by the Work Group on Quality. Dr. Iezzoni noted that HCFA needs to have its final regs on risk adjustment by March 1999, so to be helpful the Committee's event should take place before then.
Dr. Iezzoni later asked that Committee members receive copies of the September 8 Federal Register notice from HCFA about risk adjustment methods. (It will be in the November agenda book.) It clearly outlines the issues and data problems in this area. She explained that her short-run goal for a Committee discussion of this issue would be to make a constructive contribution to resolving the debate. The long-run goal is to change the incentives for capitated plans to care for sick people.
Dr. Detmer said the Committee should keep an eye on both the research and quality measurement issues. Dr. Lumpkin proposed that NCVHS identify a research agenda in relation to data, with the idea not of carrying it out but of annually assessing progress on it.
Ms. Greenberg noted that promoting a research agenda is well within the scope of the Committee's mandate. She also reminded the group of the excellent panel on data quality for quality measurement (March 1998), and the talk of publishing something from that. She and Ms. Coltin discussed the possible timing and rubric of a future meeting on quality.
For Dr. Friedman, Dr. Detmer reported on discussions with CNSTAT and others about how the Committee's work in this area relates to the broader picture of a vision for the future of health statistics and the health information infrastructure. He suggested having a panel discussion at the November NCVHS meeting with all the principals (i.e., NCVHS Work Group, CNSTAT, NCHS, Data Council representatives) to explore these issues and facilitate a more concerted planning effort.
The group discussed these goals in respect to the November NCVHS agenda. Dr. Detmer asked Ms. Greenberg or other Committee staff to talk to Dr. Ed Perrin, CNSTAT Chair. He then mentioned the topics for the six papers being commissioned for this project.
Dr. Detmer praised Work Group lead staffer Dr. Mary Jo Deering for her support. The Committee's concept paper on the NHII was presented to the Data Council in mid-October, and was well received. The Work Group expects to have a draft charge and work plan by February. It plans to ask the Department for an inventory of the status in the areas on which the report focuses. (Dr. Deering said a telehealth review has already been done, and Mr. Scanlon said he would secure a copy for the Work Group.) Dr. Detmer noted that the issue of technology per se -- band width, etc. -- also requires some attention. The Work Group also will take a look at what other countries are doing, to see what the U.S. can learn from them. It will be working closely with the Data Council.
Finally, Dr. Detmer observed that industry is starting to use the term "knowledge management" and to look at information technology as one component of a knowledge management strategy. This provides a more powerful and proactive metaphor than "infrastructure." Ms. Greenberg commented that WHO is redefining itself as a knowledge institution for the 21st century.
Dr. Lumpkin suggested that the Committee sponsor a conference on the state of the art of privacy, confidentiality, and security within health and health statistics -- an important issue on which there is little understanding. One goal would be producing a proceedings for use as a reference document. Dr. Deering noted the relevance of solutions being explored in other sectors.
Mr. Scanlon asked for information on any special projects that need to be reflected in the FY1999 budget. Some were mentioned. The group focused on the policy about reimbursing speakers unable to pay their own way, and they were told this is addressed on a case by case basis. Mr. Scanlon and Ms. Araki reviewed the details of funding sources and some of the anticipated spending needs for the coming year. She informed the Subcommittee that a new contractor will take over logistical support as of 1/1/99. They have been asked to provide staff work on the NCVHS Web site, and are exploring the cost of making it interactive.
The group discussed problems with travel arrangements, especially around communications.
Ms. Greenberg reported that she has revised the "Member Guidelines" and the "Guidelines for Meetings of NCVHS Full Committee, Subcommittees and Work Groups." These documents are provided by the Executive Secretary to assist members in carrying out their duties. She called attention to the policy and procedure for travel compensation, and she reminded members of the new address for the NCVHS e-mail archive, to which all messages should be cc'ed. The group discussed various facets of Committee procedure. They agreed that documents are official, and thus ready for distribution, as soon as Dr. Detmer has signed them. People wishing to see the documents should be encouraged to do so via the Web site.
The group reviewed a matrix-based work plan developed by Committee staff, and affirmed that it is useful to them. Ms. Araki invited suggestions for making it more so (to be sent to Ms. Greenberg or Ms. Adler). Dr. Detmer suggested being specific about the product or action that completes a given project.
The Subcommittee and staff reviewed the agenda and action items for the November meeting and considered how to dovetail full Committee and Subcommittee meetings, leaving enough time to accomplish things in the full Committee.
For February, it was agreed that the full Committee would meet February 3-4. The Privacy Subcommittee will meet on the 2nd for a hearing on 1) the use of health information for pharmaceutical marketing and 2) employers' use of health information.
The group agreed that sometime soon, the Committee should meet with the new Assistant Secretary and Deputy Assistant Secretary, as well as the new heads of HCFA and the Centers for Disease Control.
They identified the following items as possibilities for the February agenda:
The Work Group on Quality will either organize a panel for this or another meeting, or hold a separate meeting on quality issues. Dr. Detmer mentioned his interest in seeing an open, substantive discussion of the tensions with respect to data quality, standardization, who benefits from having these data, who should pay for the data, and so on. This might also generate a research agenda.
The group discussed possibilities for an observation of the Committee's 50th year, favoring the idea of a symposium and reception. After considering a longer meeting, they agreed on planning a half-day event, followed by a reception, attached to the Committee's June 2000 meeting. The reception might be in the Great Hall of the National Academy of Sciences building. Members of the full Committee will be invited to help work with Dr. Detmer and staff on planning the event.
Ms. Greenberg recalled that the Committee has talked about publishing, in conjunction with the 50-year celebration, a document updating the 45-year history published in 1995.
After reviewing various options, members agreed on January 7 as the date of the next Executive Subcommittee meeting.
They briefly discussed a request received for an NCVHS representative to a workshop developing the leading health indicators for Healthy People 2010, but reached no conclusion.
This concluding the Subcommittee's business, Dr. Detmer adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/s/
Don E. Detmer Feb. 16, 1999 ________________________________________________________
Chair Date