16Central Medical Healthcare System:The Case of the Well-Aggregated Patient Data

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Central Medical Healthcare System:

The Case of the Well-Aggregated Patient Data

Laura Larsson, Michael Lieberman, and Kelly J. Bradway

Background of Central Medical Healthcare System

Central Medical Healthcare System (CMHS) is the region’s historically premier health- care delivery system. It is comprised of a broad network of primary care physicians, specialists, outpatient centers, and hospitals. It is a recognized leader in health care, research, and education. Its mission statement reads that it is “committed to the care and improvement of human life” and “the provision of high-quality, cost-effective, and state-of-the-art medical services in a compassionate, caring manner responsive to the needs of the community.” Additionally, it has incorporated the following values:

• Treat each other, our patients, and our partners with respect and dignity.

• Achieve standards of excellence that will become the benchmark of industry practices.

• Act with absolute honesty, integrity, and fairness in the way we conduct our busi- ness and the way we live our lives and perform at all times to the highest ethical standards.

• Achieve a competitive return for our investors.

The system’s core business is owning and operating specialty hospitals, outpatient surgery centers, home health agencies, rehabilitation hospitals, psychiatric hospitals, and long-term care facilities in the Midwest. It provides comprehensive inpatient and outpatient services to a vast geographical area.

CMHS is headquartered in Nashville, TN, and employs about 80,000 staff. Through its outpatient clinics, it employs one third of its physicians, with the other two thirds being community physicians with inpatient admitting privileges. Managed care has been widely adopted in the region and has put quite a strain on CMHS’s finances.

Because of the fierce competition in the region, it has had to aggressively compete for managed care contracts. Revenue has decreased, while medical costs, especially phar- maceutical costs, have continued to rise. In order to maintain its leading position, CMHS needs to find new sources of revenue.

CMHS Information and Data Environment

The CMHS information technology (IT) division captures and stores individual pa- tient medical records from about 550,000 customers in its various databases. These records contain sensitive health data as well as demographic information such as phone

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numbers, social security numbers, employment information, birth dates, diagnosis codes, encounter notes, and financial and insurance information. The IT division staff is well versed in data warehousing and data management. They provide data for most healthcare management needs and regularly produce management reports used to monitor utilization and cost patterns by delivery site, as well as generate member demographics such as contracting provider entity, employer group, and other carrier- designated variables.

CMHS instituted an electronic medical record (EMR) in its outpatient clinics 5 years ago, and after some initial missteps, it has been well received by the physicians and administrators. Community physicians (not employed by CMHS) use the inpatient system but currently do not use the outpatient EMR in their practices. The chief exec- utive officer (CEO), Marcus Orell, is a charismatic leader who sincerely believes that the EMR will help save lives by providing necessary patient information in a timely manner. His vision percolates throughout the organization and influences most decisions.

Decision Making in CMHS

When an important issue arises, it is directed to the appropriate individual who either researches the topic himself or has a colleague collect information. He then brings it up before one of three steering committees. Each committee is a cross-functional group made up of approximately ten people with representation from three groups: clinical (physicians and other clinical personnel), business/financial, and the healthcare privacy officer, Lynn Schneider. Each member of the steering committee keeps external per- ceptions of CMHS by consumer groups in mind. One of Schneider’s roles is to help identify where she believes consumer groups will have the most concerns. As in other large organizations, each issue has its own champion—usually the individual who brings it to the steering committee. At least one of the members acts as a “devil’s advocate”

to stimulate discussion of all related issues.

The interplay among these two individuals and the steering committee members helps to identify critical issues so that there are few surprises later. Ultimately, the head of the steering committee, usually a vice president (VP), makes the final decision on the issue, though an attempt at consensus is usually made. As a matter of form, the VP runs the decision past the CEO for final approval. The legal department always clears the idea before any action is taken.

The Problem

UA Pharmaceutical, Inc., is a megalithic, multinational pharmaceutical company desir- ing to increase its share of the highly profitable antihypertensive market. UA Phar- maceutical has approached Dr. F. Haustus, director of data commercialization, about implementing a disease management program at CMHS. The program would be imple- mented through the EMR to alert physicians when hypertensive patients are not being managed according to established clinical guidelines. Schneider is very enthusiastic about the program, as it could lead to improved care for CMHS patients. In order to offset the cost to CMHS of implementing this system, UA Pharmaceutical would like to pay a fee that would more than compensate the healthcare system for this cost.

In return, UA Pharmaceutical wants to show that the disease management program 16. The Case of the Well-Aggregated Patient Data 171 LTF16 10/11/2004 9:01 AM Page 171

improves patient care. Therefore, they want data from before and after implementa- tion to show that the intervention was effective.

UA Pharmaceutical is asking only for scrubbed, aggregated data, not access to patients’ personal medical records. Scrubbed, aggregated data is data that has been

“cleaned up” to remove duplicate records and personal identifiers and combined in a way that eliminates the ability to identify individuals. Haustus realizes that access to scrubbed, aggregated data is the critical issue.

UA Pharmaceutical needs the data for its researchers and marketers who have been asking for outcomes data to support internal research that can lead to more effective marketing. CMHS needs the income that could be generated from this new venture and the support it could provide to the IT division.

After discussing the issue with some of the stakeholders, several concerns are iden- tified. Answers to the following questions are needed: Just how far does CMHS wish to go with patient confidentiality? Can scrubbed or aggregated data be resold to employers, pharmaceutical firms, companies, or foundations? Are there ethical or busi- ness concerns that might affect or limit the distribution of this data? What are the business partner’s responsibilities to protect the data?

Before meeting with the appropriate steering committee, Haustus laid out some of the costs and benefits to various internal and external stakeholders as follows.

• IT Division/Department. They are happy to have someone making use of the data.

They know the IT division will have to support implementation of the disease man- agement program.

• Physicians.They are concerned about this invasion of patient privacy and are worried about the confidentiality of the medical records. They understand that aggregated data can be used to assess how well physicians are following standard care guide- lines. They see the potential for collecting useful outcomes data but are concerned that they will be penalized if they stray from care guidelines.

• Business/Planning staff. They are enthusiastic about potential new revenue. They see the potential for collecting useful outcomes data that can be used to evaluate physi- cians on their performance. They believe that a disease management system will improve public relations.

• Patient and consumer advocates. They feel that patients should be informed even if no personal data is being given out. They are concerned that UA Pharmaceutical will somehow find out about patients’ conditions and will send out health promotional materials and personalized pharmaceuticals based on the patients’ medical needs.

They believe patients should be given the opportunity to say “no” to having their data included in this project upfront. They are concerned that an individual’s medical record may become a marketing tool. They are also worried that aggregated, de- identified data may lead to a greater chance of medical record abuse and of causing real damage to people. They believe that opening up patient records is unethical and may be unrestrained. They are concerned that employers may misuse healthcare data.

Questions

1. Based on these concerns, should Haustus champion this program?

2. Is the risk (no matter how small) of potential loss of trust, negative publicity, or loss of reputation worth the potential benefit UA Pharmaceutical can offer?

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3. As the potential for innovative, nontraditional relationships between medical centers and for-profit entities grows, how can these relationships be effectively eval- uated and managed?

Analysis

After considering all sides of the opportunity, Haustus decides to champion the program under the following conditions:

• First, they will accept only enough funding to develop the disease management soft- ware program, implement it, and provide training to their employees, so as not to be seen as merely selling data.

• Second, CMHS will set up a disease management program data committee that will include a physician, the CMHS privacy officer, a consumer advocate, and a repre- sentative from UA Pharmaceuticals. The committee will be charged with determin- ing what data will be made available to UA Pharmaceuticals and how privacy and confidentiality will be maintained.

The money will be used to fund development of the software through the IT divi- sion. By developing the software internally, several of the IT division employees will be supported for several years as they work on the program. CMHS will get a software program developed to meet its disease management needs as well as a management tool to evaluate its physicians. In addition, if UA Pharmaceuticals chooses to license the software for use in other healthcare settings, the licensing fee will be a healthy revenue stream for CMHS for several years.

With this solution, CMHS can develop a new revenue stream without being seen as merely selling data. UA Pharmaceuticals will gain access to some aggregated data.

Additionally, if one assumes that because of this program more patients are treated with antihypertensives, its revenue will increase. By including physicians and consumer advocates on the data committee, CMHS can avoid negative publicity and resistance to this program.

Although Haustus feels this is the best course to follow and will likely be success- ful, he realizes that there could be problems. UA Pharmaceuticals may not feel that there is enough of a benefit to them with this scenario and may reject it. Additionally, it might be difficult to form a workable disease management program data committee.

It will be essential to choose members who are flexible enough to work toward an acceptable solution for all while still maintaining their core convictions. Finally, even with the committee, the CMHS image could still be tarnished if the program is seen as merely a clever way of selling data to UA Pharmaceuticals.

References

Joint National Committee on Prevention, Detection, Evaluation, and Treatment of High Blood Pressure, Sixth Report. National Institutes of Health, National Heart, Lung, and Blood Insti- tute, 1997.

O’Harrow R Jr. Patient files opened to marketers, fundraisers: critics decry exemptions won through lobbying. Washington Post January 16, 2001;E1.

Rindfleisch, T. Confidentiality, Information Technology, and Health Care.

U.S. General Accounting Office. Medical Records Privacy: Access Needed for Health Research But Oversight of Privacy Protections Is Limited. Washington, DC: U.S. General Accounting Office, February 1999. http://www.gao.gov/.

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