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Registry Profiles

AIRA SnapShots -- July 2005


TABLE OF CONTENTS

  1. AIRA President's Report
  2. A Report on National Health Initiatives
  3. ECBT Meets with HHS Secretary Leavitt
  4. Can Your IIS Be a RHIO?
  5. Are We a RHIO Now?
  6. California Champions Training Standards of Excellence
  7. Grant Opportunities for IISs
  8. Research and Evaluation Update

Click here for file (.doc).


President's Report

Reading Sue Salkowitz’s excellent summary of the whirling sea-change occurring in Health IT (see below), and the narratives of the two regional immunization registries exploring how to form or be part of a Regional Health Information Organization (RHIO) (also below), I am struck by how much and how rapidly the environment is changing around us. Just when immunization information systems are coming into their own and using data in exciting new ways, the world is tectonically shifting around us.

Consider the work that lies ahead of us today:

  • Refining and expanding standards for immunization information systems (IISs).  AIRA/NIP’s new initiative to create business rules for operational issues will begin by addressing the issue of MOGE (moved and gone elsewhere) and reminder-recall.
  • Integrating with other child health information systems based on PHIN standards and the experience of the PHII (Public Health Informatics Institute) Connections projects.
    Enabling 2-way, real-time data exchange with electronic medical records, so that the IIS is completely behind the scenes in providing histories and decision support to clinicians.
  • Using our extensive experience in governance, data exchange and record consolidation, and deduplication to be a major contributor to the formation of RHIOs.

And to think some of us hoped to enter a “maintenance phase” with our registries! It’s clear that registries, like most information systems, must continually evolve to stay relevant.

As we look into this future of challenges and demands, we can note with satisfaction and pride that the work we began over a decade ago—the concepts and goals and strategies—are now being applied widely across all of health care and public health.

In the past, we could work as a relatively small community to chart new paths. Today, as we look at the emergence of RHIOs and patient-centric electronic health records (note that being patient-centric was and is a hallmark of IISs), we will need to collaborate like never before. And the stakes are bigger than ever before. But the depth and strength of our experience is also needed like never before.

Submitted by Bill Brand, AIRA President


A Report on National Health Initiatives

As your representative to the eHealth Initiative  (eHI) 2nd Annual Connecting Communities for Better Health Learning Forum & Exhibition in Washington DC in May, my role was to learn what is happening to advance the goals of the Strategic Framework announced in  July 2004 by the Office of the National Coordinator for Health Information Technology (ONCHIT), Dr. David Brailer, to promote the role of IISs as players and to report on some of the key issues relevant to AIRA. This conference was preceded by a one day business meeting of the Public Health Data Standards Consortium (PHDSC -www.phdsc.org), which AIRA has just joined.

These conferences provided a blend of presentations on NHIN (National Health Information Network) initiatives in various stages of development: case studies of health information interchange (HIE) projects already in progress; workshops on how to begin; governance, business case, legal, and announcements of major government, legislative and foundation organizational and funding initiatives; and sessions on technology activities, particularly around standards. In this regard, they remind me of the development of immunization registries These presentations can be accessed at http://www.ehealthinitiative.org.

The NHIN involves players at the national level and stakeholders in the business, technology and healthcare sectors far beyond those which registries, and indeed public health, have engaged with. Therein lies the dilemma AIRA faces: how to engage and with whom? One important tool is knowledge about who the players are and what they are doing. To that end,  the following summarizes some of the major activities, their web addresses for further study, and areas where AIRA has or can participate.

• In January 2005, the ONCHIT received over 500 responses to a 27-question RFI soliciting ideas and solutions for the design and operation of the NHIN. AIRA participated in a response by the Public Health Data Standards Consortium as  well as submitting its own response. Both are available on the AIRA web site

• In June the U.S. Department of Health and Human Services released a report titled “Summary of Nationwide Health Information Network Request for Information Responses” (http://www.hhs.gov/healthit/rfisummaryreport.pdf) which is a compilation of responses to a request for information (RFI) that sought input from the public on how to move forward on the development and adoption of a nationwide health information exchange.

Among the many opinions expressed, significant support emerged for the following concepts:  A NHIN should be a decentralized architecture built using the Internet, linked by uniform communications and a software framework of open standards and policies. A NHIN should reflect the interests of all stakeholders and be a joint public/private effort. A governance entity composed of public and private stakeholders should oversee the determination of standards and policies. A NHIN should be patient-centric with sufficient safeguards to protect the privacy of personal health information. Incentives will be needed to accelerate the deployment and adoption of a NHIN. Existing technologies, federal leadership, prototype regional exchange efforts, and certification of EHRs (Electronic Health Records) will be the critical enablers of a NHIN. Additionally, key challenges to developing and adopting a NHIN were listed as: the need for additional and better refined standards; addressing privacy concerns; paying for the development and operation of, and access to, the NHIN; accurately matching patients’ identity; and addressing discordant inter- and intra-state laws regarding health information exchange.

• RFPs to implement the Department's health IT strategy  were issued by HHS. Additional information can be found at http://www.hhs.gov/healthit/contracts.html.

• Health and Human Services Secretary (HHS) Mike Leavitt released a 500-day plan describing many of his priorities and providing direction to the daily leadership and management of HHS. The plan includes actions the department can complete within 500 days that will yield results within 5,000 days.
The ten principles, listed below are not all inclusive but do provide the philosophical underpinnings for his 500-Day Plan.

   1. Care for the truly needy, foster self-reliance.
   2. National standards, neighborhood solutions.
   3. Collaboration, not polarization.
   4. Solutions transcend political boundaries.
   5. Markets before mandates.
   6. Protect privacy. 
   7. Science for facts, process for priorities.
   8. Reward results, not programs.
   9. Change a heart, change a nation.
  10. Value life.
The plan will be updated every 200 days. To learn more, go to
http://www.os.dhhs.gov/500DayPlan.

As AIRA knows through its Utah members, Secretary Leavitt is registry-friendly. This web page should be read to see where registries may fit into Leavitt’s priorities.

• On June 6, 2005, Secretary Leavitt announced the formation of a national collaboration, the American Health Information Community (AHIC), that will advance efforts to reach President Bush’s call for most Americans to have electronic health records within ten years. http://www.hhs.gov/healthit/ahic.html

The AHIC will help nationwide transition to electronic health records, including common standards and interoperability, in a smooth, market-led way. The AHIC, which will be formed under the auspices of the Federal Advisory Committee Act, will provide input and recommendations to HHS on how to make health records digital and interoperable, and assure that the privacy and security of those records are protected. Efforts are underway to ensure AIRA’s participation in this initiative.

• One of the eHI Forum’s highlights was release of eHI’s Parallel Pathways for Quality Healthcare—a framework and set of principles for aligning emerging incentive programs with both quality goals and the HIT infrastructure required to achieve those goals, within physician practices and across states, regions and communities through health information exchange. The paper can be accessed by visiting  www.ehealthinitiative.org and clicking directly on the link to Parallel Pathways in the center of the page.

• eHI announced the  deadline of  June 15, 2005 for the Connecting Communities Survey on Health Information Exchange. The goal of this survey is to catalog and share the progress of these initiatives to inform policy, identify barriers, and share best practices. Those who participate in the survey will significantly improve their ability to network with and learn from others who are in similar stages of readiness. Only those stakeholders who had filled out the survey by June 15, 2005 will be eligible for 2005 awards under the Connecting Communities for Better Health Program.
AIRA members should look at the survey itself as an example of the types of questions to ask if your public health department or registry is planning to participate in a RHIO.
http://www.surveymonkey.com/s.asp?u=308461041929

• The formation of RHIOs is a work in progress, and even after the results of the eHI survey are posted, there will be new activity that is not yet on their radar. However, the CCBH (Connecting Communities for Better Health) Resource Center on their website is a very good place for current and useful information. http://ccbh.ehealthinitiative.org/. A summary of state and local legislation that will suppport and fund various segments of this broad initiative is also posted on www.ehealthinitiative.org

• For more current information, the Healthcare Information and Management Systems Society (HIMSS), a major player in the HIT initiatives, announced on June 21 the HIMSS Health IT Legislation Crosswalk developed by the HIMSS Advocacy team. With seven pieces of healthcare information technology (IT) legislation now under consideration by the 109th Congress,  it evaluates the specifics of each bill The legislation listed on the crosswalk includes:

  • National Health Information Incentive Act of 2005 (H.R. 747)
  • 21 st Century Health Information Act of 2005 (H.R. 2234)
  • Affordable Health Care Act (S.16)
  • Patient Safety and Quality Improvement Act of 2005 (S.544)
  • Information Technology for Health Care Quality Act (S. 1223)
  • The Health Information Technology Act of 2005 (S. 1227)
  • Health Technology to Enhance Quality Act of 2005 (S. 1262)

To access the HIMSS Health IT Legislation Crosswalk, visit http://www.himss.org/Content/files/LegislationCrosswalk-109thcongress.pdf. The HIMSS Advocacy Center (http://www.himss.org/advocacy/news_tracker.asp) tracks state and local legislation.

• On May 18th there was a Connections webcast sponsored by The Public Health Informatics Institute (PHII) titled “Ready or Not: The Role of Public Health in Regional Health Information Organizations (RHIOs).” This can be accessed by going to http://www.phii.org/webcasts.html.

• Additional information on these types of activities can also be found by going to the RWJF InformationLinks page to sign up for the webcasts: www.informationlinks.org. There is an information interview with RWJF on the California Healthcare Foundation health IT web site, www.ihealthbeat.org. The URL to that interview is: http://www.ihealthbeat.org/index.cfm?Action=dspItem&itemID=112425

Submitted by Sue Salkowitz, Salkowtiz Associates


ECBT Meets with HHS Secretary Leavitt

ECBT's cofounder Betty Bumpers and staff recently met with U.S. Secretary of Health and Human Services Mike Leavitt and CDC Director Dr. Julie Gerberding along with NIP Acting Director Steve Cochi, to request the Secretary's assistance on several initiatives. While Governor of Utah, Mike Leavitt and his wife were avid supporters of immunizations. When beginning his term, Utah's immunization rates were among the lowest in the nation. The Leavitts worked together to increase these rates by working with existing allies, starting an Every Child By Two Utah coalition, and seeking financial and political support for their statewide immunization registry system. Former First Lady of Utah, Jackie Leavitt deserves much of the credit for Utah's immunization successes.

ECBT's cofounders visited with the Leavitts several times during their tenure to highlight their successes and provide encouragement and advice as they worked to establish successful immunization partnerships. Utah's immunization registry is now considered a model throughout the nation and their rates have risen significantly. At a luncheon meeting with Mrs. Leavitt early in March, she humbly declined credit for Utah's successes, lavishing praise on the many public health advocates that tirelessly worked for Utah's children.

During the meeting with Secretary Leavitt, ECBT requested that the he seek adequate funding for the National Immunization Program, oversee efforts to strengthen the public's confidence in vaccines, refute allegations concerning the safety of vaccines, and insure that immunization registry systems are integrated with future electronic medical health records and connected to schools nationwide.

As follow up to the meeting, a letter has been prepared by ECBT nominating Bill Brand, AIRA President, to serve on the Secretary's new commission, the American Health Information Community (AHIC). The AHIC, which will be chartered for a minimum of two years and maximum of five years, will provide input and recommendations to HHS on how to make health records digital and interoperable, and assure that the privacy and security of those records are protected. For more information on this initiative go to http://www.hhs.gov/news/press/2005pres/20050606.html

Submitted by Amy Pisani, Every Child By Two


Can Your IIS Be a RHIO?

San Diego Regional Immunization Registry (SDIR) was recently invited to be the foundation for a regional health information organization (RHIO) in that region. This proposal came from the County Medical Society’s San Diego Medical Information Exchange (SD-MINE) that has started discussions for a RHIO in San Diego County. Although the discussion has now moved beyond SDIR, the offer was intriguing and tempting. Other IISs may get similar proposals and the SDIR examination of the issues could be useful.

The main advantage of using an IIS to start a RHIO is the de-duplication tool that a registry has to offer. In addition, an IIS also provides an ever-increasing database of patients which is already highly regarded and actively used health care providers. The disadvantages of using an IIS as the springboard for a RHIO are just as easy to count: uncertain funding, registry staff involvement, privacy and disclosure issues, as well as technical questions such as what additional software components are needed and where the server(s) are housed.  For now, based on our assessment of these issues, our IIS has committed to being a part, but not the foundation, of the RHIO. So, as the concepts and plans for the RHIO form, our IIS is committed to interface with a number of different systems including a RHIO.

Submitted by Anne Cordon, MPH, CHES, San Diego Regional Immunization Registry (SDIR)


Are We a RHIO Now?

I was asked the other day how Community Health Information Collaborative (CHIC) became the lead organization for the northeast Minnesota Regional Health Information Organization (RHIO) project. My immediate response was our experience as the lead agency in eighteen counties for the Minnesota Immunization Information Connection (MIIC). I went on to explain that in the process of working with the Minnesota Department of Health in designing and implementing the immunization registry, CHIC experienced and overcame many of the same challenges that are going to be faced in the start-up of a RHIO.

Here are a few of the issues I pointed out:

  • Relationship building – we have developed a level of trust between CHIC and our provides that allows for the exchange of immunization data. Providers are sharing patient information with competitors because they accept that MIIC is a secure application and does not violate any HIPAA rules. The RHIO will be an expansion of patient data to be transferred rather than an initial request.
  • Privacy and Security agreements were developed and then had to be presented and signed by every site that contributes patient information. These agreements will need to be revised to include a larger set of patient data, a much easier process than the initial development of the documents.
    CHIC is responsible for assigning usernames and passwords for MIIC based upon the level of access the individual user is allowed. We understand that some providers require higher levels access to patient data than others.
  • A governance model and sustainable funding has been in place since 1999. The initial development of the bylaws for CHIC took two and one half years. The members of our organization are competitors in the delivery of healthcare, however in time we were able to put that all aside and come up with projects that would improve the health of our population and/or reduce the costs of operations for all involved – especially the vulnerable rural facilities.CHIC has partnered with public health, tribal health and private providers across the entire continuum of care, which is imperative for the success of a regional sharing of patient information.

In summary, the immunization registries have met with the providers, worked with them and now we’ll just be bringing them another tool to use in the care of their patients.

Submitted by Cheryl M Stephens, MBA, MT(ASCP) Community Health Information Collaborative


California SIIS Champions Registry Training Standards of Excellence

Every registry must train its users. California’s diverse population base and nine regionally-based registries—which use several different registry software applications—highlighted a need to examine training practices. While innovation flourished, a need for statewide consistency was identified. As a result, California’s Statewide Immunization Information System (SIIS) has taken on the challenge of creating and implementing registry training standards of excellence. The primary objective is to ensure that all provider offices participating in the registry receive complete and effective training from skilled registry trainers. And ultimately, that medical office staff understand how to use the registry accurately and to its fullest potential.

Using input from front-line trainers, California assembled a comprehensive training curriculum and guidelines called the Immunization Registry Training Framework. This was introduced in 2003 at a train-the-trainer seminar featuring regional best practice examples supporting the themes of provider recruitment, training, and customer service. Emphasis also was placed on building skills and competency of registry trainers to adequately prepare and instruct new registry users. A follow-up 2005 train-the-trainer event, held this past June, focused on provider retention strategies. This training event was designed for registry staff to problem-solve around implementation issues at medical offices and ultimately to promote long-term, appropriate registry use by satisfied customers.

Building on these efforts, California is now championing registry training as a critical practice standard for all states. Using the above mentioned “Training Framework” activities, a California workgroup has now adapted them to a recognizable PROW-type format. The training standards of excellence encompass a spectrum of activities divided into four sections:  1. Provider Recruitment, 2. Training Preparation, 3. Hands-On Registry Training, and 4. Post Training Follow-up and Ongoing Support. Activities in each section are further divided into levels I, II, and III of difficulty. A self-assessment worksheet and instructions have been developed to enable registries to perform a baseline self-assessment on their implementation of recommended training protocols, to identify gaps and plan to address them. All materials are available on California’s Statewide Immunization Information System website at www.ca-siis.org. For further information, contact Tammy Pilisuk, at TPilisuk@dhs.ca.gov.

Submitted by Tammy Pilisuk, MPH, CA Department of Health Services, Immunization Branch


Grant Opportunities for Immunization Information Systems

The Robert Wood Johnson Foundation (RWJF) announced in June support of a new program to fund grants to support the participation of state and local public health agencies in health information exchange. Named InformationLinks, this program will award 20 grants between $75,000 and $100,000. Deadline for receipt of proposals is September 7, 2005. To support and inform grant applicants, RWJF will conduct a Program Orientation and Tutorial via web conferences during the month of July. For complete details on the grants, to apply online, or to register for the web conferences, visit the InformationLinks website at http://www.informationlinks.org.

The following grants have been made available by the CDC:

Developing Methods and Strategies to Increase Use of Immunization Registries by Private Providers
Letter of Intent Deadline: August 15, 2005
Application Deadline: August 31, 2005
For detailed information on this grant, go to http://www.cdc.gov/od/pgo/funding/IP05-096.htm.

Enhancing Utilization of Childhood Immunization Client Recall Practices by Private Providers
Letter of Intent Deadline: August 15, 2005
Application Deadline: August 31, 2005
For detailed information on this grant, download the following pdf document http://www.immregistries.org/pdf/RFA_IP05_088.pdf


Research and Evaluation Workgroup Update

The Research and Evaluation Workgroup has completed the first part of its mission to solicit feedback from representatives of the stakeholder community on a Research and Evaluation Agenda. Over the course of the past months the workgroup, utilizing the Delphi Survey Methodology, created a tool to facilitate the collection of ideas from the community. The initial feedback was collated into similar categories to then be further reviewed by the community and assigned a ranking in terms of priority. A final report is being developed and should be ready for distribution in the fall.

Submitted by Katie Reed, Co-Chair, Education Committee