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Health Record Banking Model
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The Health Record Banking Imperative (A Conceptual Model)
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Jonathan D. Gold, M.D. M.H.A. NLM Post-Doctoral Fellow Division of Health Sciences Informatics School of Medicine Johns Hopkins University drjgold@yahoo.com

Marion J. Ball, Ed.D. Professor, Johns Hopkins School of Nursing Fellow, IBM Global Leadership Initiative/Center for Healthcare Management marionball@us.ibm.com

January 17, 2006 http://drjgold.monument1.jhmi.edu/HRBankImperativeDraft.pdf TABLE OF CONTENTS Abstract Executive Order For Transformation The Health Record Bank of 2015 References Appendix A: Proposed ePHR Format/ UMLS Health Record Indexing Appendix B: Areas of Expertise for Addressing Critical Issues Appendix C: Expert Interview Form Appendix D: Authors

LIST OF ILLUSTRATIONS AND TABLES Table 1: Common NHIN RFI respondent concepts. Table 2: Health record bank system objectives. Table 3: Examples comparing commercial banking and health record banking. Table 4: Personal health information. Table 5: Data account types. Table 6: Nine critical issues to the development of an HRBS. Table 7: ePHR Data Set (Back-end).

Figure 1: Personal health record data sources. Figure 2: File processing for storage and leasing. Figure 3: Data triage. Figure 4: Provider storage options. Figure 5: Provider account. Figure 6: Sharing of data between Health Record Bank and affiliated Bank Association. Figure 7: Bank Association Data Exchange leasing data to third parties. Figure 8: Consumer, provider, or pharmacy dividends.

ABSTRACT

As opposed to the commercial banking world, no unified, functioning system currently exists for the exchange of comprehensive information across the wide spectrum of networks in health care. Regional Health Information Organizations (RHIOs) and the National Health Information Network (NHIN) have been advanced as vital building blocks to meet President Bush’s executive order for the development and implementation of a nationwide health information infrastructure. Many challenges check an early answer to the president’s call.

Essential attributes of the NHIN include a decentralized architecture using the internet and defined standards for recording data, a joint public/private effort, a patient-centric focus which protects the privacy of personal health information, the use of incentives to accelerate NHIN deployment, and the employment of existing technologies/federal leadership/regional prototype efforts. In addition to challenges directly associated with these attributes, other commonly cited significant issues include accurate patient identification and record matching, and discordant inter- and intra-state laws.

In answer to these challenges, but also in order to maximize this opportunity to improve the quality and efficiency of healthcare delivery, to facilitate true population-based research, and to develop a sustainable system with a rational business case allowing it independence from governmental budgets, we propose a Health Record Banking System (HRBS).

Emulating commercial banking, which has already addressed many of those fundamental elements and key challenges facing the NHIN, multi-use health record banks (HRBs) will serve the needs for immediately accessible and secure data for diverse stakeholders. A consumer-centric electronic personal health record, containing all health data from multiple sources and owned by the person, will be stored in a personal health record account which uses a standard format for receiving and distributing data over the web. Providers, healthcare organizations and commercial enterprises, too, will maintain accounts in this health information repository. The HRB will in turn sell owner-authorized de-identified data to industry for its use in research and data mining. Research institutions and government agencies, also, will have access to this critical de-identified data. The sale of de-identified data from the record and other services will make this system economically sustainable, return a dividend to the data’s owner, and facilitate the standardization of information.

An HRBS model is presented here and nine critical issues associated with its development and implementation are listed.

EXECUTIVE ORDER FOR TRANSFORMATION

Addressing the challenge set forth by President Bush’s April 2004 Executive Order calling for the “development and nationwide implementation of an interoperable health information technology infrastructure to improve the quality and efficiency of health care”, the U.S. Department of Health & Human Services (HHS) Office of the National Coordinator for Health Information Technology (ONC) advanced a strategic framework to realize four primary goals: inform clinicians, interconnect them, personalize care, and improve population health.

Recognized as critical to health information exchange, Regional Health Information Organizations (RHIOs) have been designated as an agent to “foster regional collaborations among health care entities so that a patient's information can be securely stored in the local community but is electronically accessible to those involved with providing their care in that community”. The overall goal of the formation of a health care data exchange remains dependent on a common set of standards to enable communication. A National Health Information Network (NHIN), which will serve as the interconnecting infrastructure between the RHIOs, will facilitate their interoperability, allowing the free flow of medical information with the patients.

To advance the development process for the NHIN, HHS published a request for information calling for outside input in the design and operation of this network. In the subsequent summary issued following responses to this request, a number of common themes emerged from respondents, as shown in Table 1.

•	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 deployment and adoption of a NHIN. •	Existing technologies, federal leadership, prototype regional exchange efforts, and certification of EHRs will be the critical enablers of a NHIN. •	Key challenges will be 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; and addressing discordant inter- and intra-state laws regarding health information exchange. Table 1: Common NHIN RFI respondent concepts

Different approaches have been suggested for the final NHIN framework including 1.	a centralized network with a centralized repository, 2.	a federated architecture with RHIO repositories, 3.	federated RHIOs coordinate exchange of locally-held data, 4.	non-federated peer-to-peer networks, 5.	intermittent or pervasive communications, and 6.	consumer-controlled data repositories.

In order to address the principal concepts educed during the RFI process and to meet the four primary goals set forth by the ONC, and in order to provide a sustainable institution independent of long term government funding, we propose a Health Record Bank System (HRBS). As shown in Table 2, the HRBS objectives match those for health information exchange which define the RHIO/NHIN structure but also focus on a means for financial independence and a mechanism for fostering medical research.

•	Uninterrupted access to patient records. •	Maintenance of the rights of the consumer to control his/her personal health data. •	Provision of a means for storing all electronic health records and data in fail-safe, readily accessible, secure, and restricted repositories. •	Advancement of the wide-ranging information needs of the healthcare provider in the treatment of the patient. •	Promotion of an environment for knowledge discovery through large population-based research. •	Realization of an independent, sustainable system focused on its primary objective (i.e., the secure storage and delivery of health data), while providing a solid and rational business case. Table 2: Health record bank system objectives

With the transformation of today’s nonstandard, partitioned, and consumer-hostile system for recording and maintaining health records through the conception and realization of a nationwide interoperable health information infrastructure, we have the opportunity to improve the quality and efficiency of health care delivery, to facilitate true population-based research, and to develop a sustainable system with a rational business case allowing it independence from governmental budgets.

Presented below are a vision of transformation in healthcare technology, an overview of the Health Record Bank System, and a concise presentation of nine critical issues related to the development and implementation of a health record banking system. THE HEALTH RECORD BANK OF 2015

As obesity overtakes smoking as the number one preventable cause of illness in American society, we will see a continued upsurge in diabetes, heart disease, hypertension, hyperlipidemia, stroke, breast cancer, colon cancer, gallbladder disease, and arthritis. By the year 2015, rising healthcare costs coupled with the increased prevalence of chronic diseases will compel opinion leaders and lawmakers to set societal standards for treatment quality, resource distribution, and patient rights. New healthcare modalities, including the management of information resources, will be employed to deal with this growing health and economic crisis.

One technology which will be essential in addressing these needs will be centered on the data contained in the electronic health record. As our society becomes more connected via the internet, purchases and sells products and services over this medium, and accesses and maintains financial services on web servers, a new generation dependent on secure and private access to data will recognize and accept the importance of this means for documenting, storing, and sharing their vital health records over a web-based system.

In order to meet the consumer’s demands for complete ownership of all health records and control of information access for review by others, shared repositories (or Health Record Banks—HRBs) will become the future warehouses for all health data. These multi-use repositories will have common interfaces for receiving and transmitting data, use similar types of storage, and offer comparable services. In many ways this type of repository will function like today’s banks—consumers (as well as health organizations and health related businesses) will maintain different types of accounts, allow certain institutions (doctors, clinics, hospitals, etc.) automatic read access or deposit to their accounts, will receive dividends for storing records in the bank and allowing access to de-identified health data, and will have the ability to change banks, if so desired.

Different types of data will be deposited into accounts. Consumer-centric personal health record data might include all records about a patient entered by healthcare workers; laboratory, pathology and radiology data; psychiatric records; dental records; health insurance records; hospital records; and pharmacy records. Additional data, like monitoring device records, genomic data, health directives, personal health diaries and living wills could also be included. Joint accounts shared by families will allow access to information by a legal guardian in the case of disability or incompetence.

Through the electronic personal health record (ePHR, the equivalent of the commercial bank’s individual or joint personal accounts), the patient will control his or her own data, have a complete record and make any or all of the information instantly available to any caregiver at any time anywhere in the world. The consumer will define parameters as to who has access to what information over what period of time. Permitted healthcare providers will be able to access complete data, in a paperless environment. All medical and health related transactions will be recorded and entered into the ePHR. No longer will the subjective recall of one’s medical history hamper timely or correct treatment of the patient. In addition, the consumer will choose if he or she wishes to sell de-identified data from the record in return for some dividend.

The provider may deposit all health records he has authored, correspondence authored by or received by him, and administrative data into a provider health record account (similar to the small business accounts of commercial banks). Larger enterprises, such as hospitals and health maintenance organizations, will store their records in business accounts comparable to commercial bank corporate accounts.

The medical research benefits for complete and accessible digital health records are obvious. Huge stores of de-identified data will be rapidly mined for information and knowledge regarding many research questions about diagnostics, therapy, and education. Instead of research limited to scores or hundreds of participants, millions of relevant files will become immediately accessible to the investigator. Questions which heretofore could not be approached because of the limited availability of subjects and the expense of compiling data will no longer be unsolvable.

Equally compelling, though, is the business case. Here, we are presented with a win-win situation. The consumer will have control of his or her records and receive dividends (money and/or health “credits”) for selling de-identified health data and for storing the health record in a standardized form at an established repository. The healthcare industry, pharmaceutical industry, insurance firms, medical researchers, etc., will reap great value from data mining and researching the enormous databases of de-identified health data and will readily pay for access to these. Government agencies (Department of Health and Human Services, Centers for Disease Control, Homeland Security, and local and state health departments) will be able to monitor sentinel events as well as develop reasoned long term health policy.

To summarize, a multi-use health record bank will serve the needs for immediately accessible and secure data for diverse stakeholders. A consumer-centric electronic personal health record, containing all health data from multiple sources and owned by the person, will be stored in a personal health record account which uses a standard format for receiving and distributing data over the web. Providers, healthcare organizations and commercial enterprises, too, will maintain accounts in this health information repository. The HRB will in turn sell owner-authorized de-identified data to industry for its use in research and data mining. Research institutions and government agencies will also have access to this critical de-identified data. The sale of de-identified data from the record will make this system economically sustainable, return a dividend to the data’s owner, and facilitate the standardization of information. OVERVIEW OF THE HEALTH RECORD BANKING SYSTEM

To meet the challenge of preserving and protecting the privacy, confidentiality, and security of tomorrow’s expansive medical records, to insure their integrity and availability, and to enable rapid communication of their contents, we must look beyond the walls of traditional health record storage. In many ways, we must use a child’s creative imagination and an engineer’s practical approach.

One field which has had to deal with these responsibilities has been that of commercial banking. In the banking world, there are many different types of account holders, accounts, and even banks. These include small account holders (private users who hold personal or joint accounts), medium sized clients (small and medium sized businesses), and large enterprise customers (corporations). A multitude of different types of accounts and client services are available to the customer—savings accounts, checking accounts, safety deposit services, etc. Certain banks specialize in particular aspects of banking, such as savings banks, savings and loan associations, credit unions, investment banks, etc. The bank’s chief source of revenue is through the re-use of the money it receives from its depositors (by lending or investment).

Commercial Banking	Health Record Banking Account Holders	Small	Personal or Joint	Individual, Joint or Family personal health records Medium-sized 	Small- and Medium- sized businesses	Solo Physicians, Group Practices, Pharmacies, etc. Large enterprise	Corporations	HMOs, Hospitals, etc. Types of Accounts		Savings, Checking, Safety Deposit services, IRA, etc.	Text health record, Imaging, AV/ Monitoring, Genomic Bank Types		Savings, S&L, Credit Union, Investment, etc. Full Service Bank, Genomic Specialty Bank, Physician Services Bank, etc. Chief Revenue Sources		Investment, Lending, etc. Member services, Lease of De-ID’d data, Disaster Recovery Plans, Specialty Services, Health Kiosks, Health Record Curation, etc. Table 3: Examples comparing commercial banking and health record banking

In general, the HRB system shall function similarly to commercial banking. (Table 3). If we overlay the HRB model on top of the commercial model, many of those features found in the commercial bank today are clearly paralleled. The diverse patron groups include small account holders (the individual consumer with a personal health record), medium sized clients (the physician or group practice, pharmacies, etc.) and the large enterprise customers (HMOs, hospitals, etc.). Distinct accounts will be used for storing different classes of health data. Specialty banks might store only a particular type of data (e.g., genomic data) or only maintain a particular type of account (solo physician or group practice accounts). Comparable to commercial banking, the chief source of revenue will be through leasing de-identified data for re-use by commercial and research enterprises. Additional sources of revenue might include Information Disaster Recovery Plans (and/or Insurance) for individuals and enterprises, member service charges, health kiosks/ATMs, health record curation, and specialty service charges (e.g., Consumer Healthcare Financial Advisors).

The HRB will not only allow the consumer to store all personal health information in a secure virtual “account” (or ePHR), but, like in a commercial bank, will pay its owner a dividend for this. These records will be owned and controlled by the consumer. In much the same way that a bank depositor maintains a bank account, the consumer will determine who has access to which parts of the record over what period of time and who can deposit information in the record. As shown in Figure 1, the consumer will grant different providers and data sources different access and deposit rights to the health record account.

Figure 1: Personal health record data sources

The electronic patient health record will include information from a wide range of healthcare sources, along with that added by the consumer. (Table 4).

•	Records from doctor and provider files •	Clinic, dental and hospital records •	Radiology, laboratory, pathology and genomic data •	Environmental and exposure data •	Monitor measurements •	Pharmaceuticals ordered and received •	Information added by the consumer him/herself [including treatment directives, living wills, health diary, etc.]) •	Health insurance files •	(and might even include Alternative therapy records) Table 4: Personal health information

Files deposited in the account will be processed for storage and leasing. This will include assignation of an encrypting code, division of the file into permissible and prohibited leasing components, appending of the record envelope information (discussed below) and cataloging of files for leasing, and the preparation of a leasing data catalogue. All records will be stripped of all names from the data and use a code substitution (names and identifiers of all patients and providers will be placed on an encrypted master list separate from the file). (Figure 2).

Figure 2: File processing for storage and leasing

Today’s electronic medical records (EMRs), where they exist, are primarily text based and include the providers’ notes and laboratory data. This type of digital data takes up a relatively small amount of memory. Digital imaging, another essential part of the medical record, requires a great deal more storage space for even the simplest of images. The importance of other data classes and access to their information is changing rapidly. Two classes of data which will become much more significant in the future EMR are the genomic record and audiovisual/ monitoring device entries. Practically speaking, not all of the information contained in these various classes will be examined often, nor will it need to be accessed instantly by the physician. Nonetheless, all classes will need to be available on demand and searchable. (Table 5). Finally, an audit trail of who has accessed or altered a file and when this occurred will always be a vital part of the record.

Data Class	Format	Examples	Provider Access Needed	Storage Size	Research Access Needed	Comments Text Health Record	Digital Text (Structured, Summarized, Free)	EMR, Rx, Labs, POE transactions, Insurance	Often	Small to Medium	Common	Readily searchable; Majority of entries Imaging	Digital	Radiology, Nuclear medicine, MRIs, Scanned records, Pathology images	Occasional	Large	Rare Audiovisual Record and Monitoring Device	Analog and Digital; Sequential/ Temporal	ECGs, 24 hr. holter monitor	Rare to Often	Large	Rare to Common Genomic Record	Digital. Partial record. Static (after complete)		At present, Rare	Large	Rare to Common	Searchable Table 5: Data account types

Data will be triaged by the bank and stored in different accounts according to data class. (Figure 3). These account types include text-based data, digital imaging, audio-visual or monitoring device data, and genomic data. Each file will contain owner-specified allowable and prohibited leasing components.

Figure 3: Data triage

To author an entry in a patient’s file, the provider will receive initial record access permission from the consumer. This will allow the provider to view read-only files, create new entries, and upload them to the consumer’s ePHR. Revising a new entry in the record will be time-limited. While write access to files will require current consumer permission, the provider will permanently retain the right to read all components of a file which he/she has authored and to view all reports specifically addressed to him/her.

When the provider writes a medical record entry, a copy is deposited in the consumer’s personal health record account while an identical copy is retained by the provider for storage either locally on the provider’s computer or in the provider’s health record account. (Figure 4). The provider’s account will contain all authored entries for multiple patients. A provider working in more than one setting, for more than a single group, or simply interested in maintaining more than one account, may have multiple provider accounts. A specific patient’s records may only appear in one of the provider’s accounts and may not span multiple accounts. Provider accounts may include all documents authored by the provider, those reports or correspondence addressed to him/her about a patient (including lab results), and all provider administrative data. (Figure 5). Like PHR accounts, a bank log will preserve a legal record of all provider account transactions (including accesses, reads, and writes).

Figure 4: Provider storage options

Figure 5: Provider account

The consumer may choose to sell his/her de-identified data in return for some dividend if he/she wishes (i.e., after removal of name, address, social security number, etc.). With the consumer’s permission, the HRB will lease access to the de-identified data in databanks for use by pharmaceutical and medical technology companies, insurance companies, research institutions, universities, and government agencies. (Figure 6). This databank will serve as an invaluable source for research purposes.

Figure 6: Sharing of data between Health Record Bank and affiliated Bank Association

Through the ‘Bank Association Data Exchange’ (possibly a division of the RHIO) (Figure 7), a consumer’s leased de-identified health data, will return a dividend to its owner. This dividend may be given each time the consumer’s de-identified personal health record information is accessed, may be directly and only associated with the consumer’s age, or may be awarded in some other manner.

Each ePHR will include ‘envelope information’ which will serve as a searchable index to the record. Envelope information will include both a stable data section (containing demographic information) and a labile data section (composed of UMLS terms, for capturing medical terminology entered in the record and appended after each new ePHR entry). (An example of one proposed ePHR format with health record indexing can be found in Appendix A.) Satellite HRBs will transmit lists of de-identified patient record envelope information to the central Bank Association for use in preparing leasing databases.

Figure 7: Bank Association Data Exchange leasing data to third parties

When the Bank Association receives a query from an interested third party, envelope indices will be compared to the query’s term parameters. Records corresponding to a researcher’s query specifications will be located. The de-identified records will then be copied into a temporary query file to the Bank Association’s Data Exchange (RHIO). The temporary query file will serve as an unabridged database customized for use by the leasing researcher. Leasing of this file may be time-limited, read access limited, or controlled in some other manner.

The choice of which account holder’s files (consumer, provider, or other patron) should be accessed for a research question, ultimately will depend upon the question being asked and the aim of a study. For instance, if the question being investigated will be “How does the combination of drug A and drug B affect the libido?”, the most likely approach would be to search patient data records (initially screening the files envelope headings). If, however, the question shall be simply “How often are drug A and drug B prescribed to the same person within a given time frame?”, then reviewing the pharmacy health data accounts will be simpler, less time consuming and cheaper. Another study question might be “What types of physicians tend to prescribe drug A in combination with drug B?”. This would most easily be answered by reviewing the provider health data accounts.

As shown in Figure 8, consumer, provider, or pharmacy will receive health dividends for leasing de-identified data. Additional discount incentive programs will be possible from health organizations (HMO/hospitals) for using digital records.

Figure 8: Consumer, provider, or pharmacy dividends

Legislation, similar to that governing commercial banking institutions, will need to define consumer and bank controls, establish a regulatory commission and committees, and protect the consumer against loss in much the same way as the Federal Deposit Insurance Corporation (FDIC) does for financial accounts.

Further research must focus on addressing issues critical to the successful development and implementation of a health record bank system. These include concerns related to all health information exchange proposals as well as those distinct to a health record banking model. Challenges and Opportunities Facing Health Record Banking Adoption

Vital challenges to the implementation of any health information exchange have been documented in the response to HHS’s RFI for the National Health Information Network. As noted earlier, these include the need for additional and better-refined standards, addressing privacy concerns, paying for the development and operation of NHIN and access to it, accurately matching patients, and addressing discordant inter- and intra-state laws regarding health information exchange. To these, we have included additional challenges and defined nine issues critical to the development and implementation of a health record banking system and questions related to these areas. (Table 6). The success of the HRBS model is dependent upon addressing and solving these significant challenges.

1.	Standardization of Data Entry and Sharing /Interoperability 2.	Information Security/ HIPAA Standards (Privacy and Confidentiality, Accountability and Auditability) 3.	Business Incentives & Considerations; Banking Model 4.	Patient Identification and Record Matching, Record De-identification and the Re-use of Data 5.	Legal, Ethical, and Legislative Issues 6.	Stakeholder Acceptance & Acceptance Thresholds (Critical Mass) 7.	ePHR Format/ UMLS Health Record Indexing 8.	Architecture (Infrastructure, Database Development, Integrity Validation, Operating Speeds) 9.	Determination of Critical Hurdles and Project Implementation Order (Predecessors/Descendants) Table 6: Nine critical issues to the development of an HRBS.

Development of such a considerable infrastructure and enterprise demands both focus on the details and the vision. This system is not about the technology; it is aimed at providing timely access to the right information and its appropriate use by the right people. Developing the crucial standards and building the core structure—a network for health records—will shape the future of health, health research and health policy. A viable and sustainable health record network which allows for the sharing of data and knowledge discovery shall launch us into the new era of health care. REFERENCES

Executive Order: Incentives for the Use of Health Information Technology and Establishing the Position of the National Health Information Technology Coordinator. The White House, April 27, 2004. Available from http://www.whitehouse.gov/news/releases/2004/04/20040427-4.html. Internet; accessed 12/16/05.

2 The Decade of Health Information Technology: Delivering Consumer-centric and Information-rich Health Care, Framework for Strategic Action. U.S. Department of Health and Human Services, July 21, 2004. Available from http://www.hhs.gov/healthit/documents/hitframework.pdf. Internet; accessed 12/16/05.

3 Goals of Strategic Framework, Program Areas. Office of the National Coordinator for Health Information Technology (ONC), U.S. Department of Health & Human Services. Available from http://www.hhs.gov/healthit/goals.html. Internet; accessed 12/14/05.

4 Summary of Nationwide Health Information Network (NHIN) Request for Information (RFI) Responses. U.S. Department of Health and Human Services: Office of the National Coordinator for Health Information Technology. June 2005. Available from http://www.hhs.gov/healthit/rfisummaryreport.pdf. Internet; accessed 12/14/05.

5 Ibid.

APPENDIX A: PROPOSED EPHR FORMAT/ UMLS HEALTH RECORD INDEXING

Category	Data Type	Section	Examples Envelope Information	Stable	Patient Identifiers	Name Identifiers (SS, HMO IDs, Insur. IDs) Links Family identifiers Provider identifiers Means of communication (phone, address, email, emergency contacts, etc.) Administrative Information (Billing, Insurance) Security/Privacy Filters	Access permissions De-identified data access consent parameters Links	Family members EHR account numbers (Text Health Record, Imaging Record, Audiovisual Record/Monitoring Device Record, Genomic Record) Providers Chronic Dis. Mgt Protocols/ Materials/ Groups Contextual Information	Age, Sex Demographics Ethnic groups, Nationality Genetics Family History Risk factor assessment links Administrative Information	Billing, Insurance, Benefits, Providers, etc.			Power of Attorney Labile	Keyword Index	Keywords (UMLS term searchable)* *All new data entries scanned for UMLS terms/keywords (Continued on following page)

Letter Contents	Stable and Labile Components	Background Medical Information	Emergency Summary (linked) Immunization History Current chronic treatment Current (and past) Medical Devices/ Prosthetics/Hearing & Visual Aids/ Dental Devices Past medical history Environmental/Exposure data Physician/Care Provider 	SOAP entries Hospital Records Dental Record	Dental Problem List Notes and Images (Text record, Imaging Record) Pharmacy Record	Drugs ordered, sold, dates Personal Health Diary	Patient’s observations of disease course Medical Directives and Living Will Imaging Record	Radiology, Nuclear Med, Digital Photography, etc.			Scanned Documents Audiovisual Record/ Monitoring Device Record	AV/ Monitoring Medical Tests Lab/Pathology Record Genomic Record Table 7: ePHR Data Set (Back-end)

APPENDIX B: AREAS OF EXPERTISE FOR ADDRESSING CRITICAL ISSUES

	Infrastructure/Technology Engineers 	Informaticians 	Payors 	Providers 	Health Policy Makers, Health Economists and Academics 	Government Representatives/ Public Officials 	Vendors 	Medical Researchers 	Healthcare Consumers (‘Patients’) 	Financial Experts 	Business Investors/ Bankers

APPENDIX C: EXPERT INTERVIEW FORM

Critical Issues: 1.	Standards/Interoperability 2.	Information Security/HIPAA 3.	Business Case/Banking Models 4.	Patient Identification/Re-use of Data 5.	Legal, Ethical, Legislative 6.	Stakeholder Acceptance/Critical Mass 7.	ePHR Format/UMLS Health Record Indexing 8.	Architecture 9.	Critical Hurdles/Implementation Order

Question List:

1.	Having reviewed the Health Record Banking System model, do you see this as a reasonable and viable idea?

2.	Regarding the model’s «critical issue to be specified» aspect and what has been outlined, what are going to be the 3-4 crucial steps and hurdles to overcome in order to make this model work effectively?

3.	Order these in terms of priorities, predecessors, successors, and dependencies.

4.	How would you go about overcoming these obstacles?

5.	What important numbers/ statistics/ information would you need to know to help design this section of the system, to help plan strategy, etc.?

6.	What relevant numbers relating to the model do you, as an expert, feel secure in providing?

7.	(optional) What other important numbers regarding costs (infrastructure, maintenance), potential revenue and expenditures, can you provide with relative confidence?

8.	What are 2-3 other critical issues (beyond the nine presented) or technologies which must be addressed for the establishment of an HRB which have not been listed (above)?

9.	What important sources or references about these issues or technologies should be used?

10.	What other domains/fields do you recommend we survey to get a better insight into issues related to the development and implementation of this model?

11.	What are the minimal functional requirements for developing and supporting a health record banking system?

12.	Can you name other people in your field (or other fields) whose opinion/views about this issue should be sought?

13.	(optional) What would be a perfect HR Banking system?

14.	Any additional comments, thoughts, suggestions. APPENDIX D: AUTHORS

Jonathan D. Gold, MD, MHA, 2024 E. Monument St., Suite 1207, Division of Health Sciences Informatics, School of Medicine, Johns Hopkins University, Baltimore, MD 21209 (drjgold@yahoo.com). Dr. Gold is currently a National Library of Medicine post-doctoral fellow in Health Sciences Informatics at Johns Hopkins University. He received his M.D. at Ben-Gurion University in Beer Sheva, ISRAEL in 1990, and gained board certification in pediatrics in 1997. Subsequently Dr. Gold served in a dual capacity—both as a primary care pediatrician and as the director of the Medical Quality Assurance Unit for Maccabi Health Service's Negev region. In 2001, he completed a Masters of Health Administration at Ben-Gurion University. A pediatrician with close to a decade of primary care practice and medical quality assurance experience, Dr. Gold is focused on the development of a consumer oriented electronic health record banking system, the practical needs of the health care provider, and the considered goals of a comprehensive health care strategy.

Marion J. Ball, EdD, Fellow, Professor, Johns Hopkins University School of Nursing, 525 N. Wolfe, Rm. 402, Baltimore, MD 21205 (marionball@us.ibm.com); Fellow at   IBM Global Leadership Initiative Center for Healthcare Management/ Business Consulting Services. Dr. Ball is a member of the Institute of Medicine, and serves on the Board of Regents of the National Library of Medicine. She also serves on a variety of boards in the area of health information technology, including Health On the Net (HON) and Health Information Management Systems Society (HIMSS) Board of Directors. She received the Morris F. Collen Lifetime Achievement Award from the American Medical Informatics Association (AMIA), and is an honorary member of Sigma Theta Tau, the Honor Society of Nursing, the American Health Information Management Association (AHIMA), and the Medical Library Association (MLA). She is the author/editor of 17 books and over 250 articles in the field of Health Informatics. Her recent book, Consumer Informatics, received the HIMSS 2005 Book-of-the-Year Award.