Written for Unlimited Priorities and DCLnews Blog.

Debra Spruill

With people getting used to easy access to information — and with automation of health records being one of the lynchpins of controlling healthcare costs, you would think there would be more progress — and technologically, there is. But maintaining computerized health care records has its own set of issues, many of them non-technological. Aside from privacy issues, there are additional factors such as the variety of sources for a person’s information, the subjectivity of much of the information, the value of including handwritten notations, and the reluctance toward fully shared information between doctor and patient. These are all issues that Debra Spruill discusses in the wide-ranging second part of Health Information Technology.

A recap — In the first article of this two-article series, the focus was a comparison of the impact the Healthcare Information Technology has on the medical community and how it paralleled the similar revolution for libraries that began in the 1960’s. I revisited the rise of BRS, Bibliographic Retrieval Services, from its beginnings in 1968 at SUNY Albany as Biomedical Communications Network (BCN). Then I reviewed SDC, Systems Development Corporation, and how it evolved from a government contract with the United States Office of Education to disseminate educational information (ERIC). SDC later developed ORBIT and NLM adopted it for its MEDLINE product. And in 1972, Dialog became a commercial online service with its strength in the science field.ⁱ All these developments served as the roots of what became known as the information industry and changed the library world forever.

I went on to demonstrate that the healthcare community had much in common with the library community. They both provide services to a varied base — libraries service public, special, government, special needs, and private organizations; healthcare provides serve groups, large regional organizations, clinics, mobile services, and special needs, etc. Ultimately both industries service the needs of individuals — whether they be patients or patrons and regardless of how their needs are presented to the respective organization. In hospitals a patient may walk into a physician’s office or clinic, be referred by another practitioner, through an emergency admission, or in a clinical trial. A library may have a patron walk in, telephone, send an e-mail inquiry, locate their collection through an Internet portal or service, be referred through a 24/7 service, or assist an instructor in study aid development. It is the similarity in servicing the end-user/patron/patient that we will explore in this article.

In addition to the diversity of organization I explored the paradigm shift of long-standing services and time-tested methods being uprooted by new methods and/or technologies. I raised the concerns of professionals whose skillsets had to be modified and sometimes augmented with new skills and tools, specifically as it related to technologies and methodologies. Education and training programs had to be overhauled to meet the new demands. And they continue to require review as new mechanisms emerge, e.g. social networking, mobile platforms, tablets.

In closing I touched on the topic of privacy — one that proved a critical issue in the information community and is certainly a concern in the healthcare community. It is here where we pick up.

The End-User — Call It Patron or Patient

While the library serves patrons and the healthcare community serves patients ultimately they are approaching their client base similarly as the end-user. In other words, the patron or patient is ultimately who they aim to satisfy.

When considering the end-user the library community was challenged with recognizing that the tools that had been developed for their profession were not necessarily those for patron use. These tools, in fact, were developed for and often by the professional, to access, record, and generally be used to provide information to a patron inquiry. A patron would come in or call or send a request stating what it was they wanted; the process was a very results oriented method. The patron did not assume to know what tool or resource was best nor did they necessarily care how the answer or solution was provided. Their interest was in getting the right answer and receiving it in a timely fashion. So if the patron was interested in learning what new materials were being developed for a given technology, for instance what plastics are now being used for kitchen appliances, they would simply ask the librarian and say I’m interested in finding out what plastics are being used with kitchen appliances. They may or may not indicate whether the appliance in question was for a professional restaurant, or whether it was meant for marine use or one in home. And even in the home is it for a base single-family home or for mobile home? This type of information would generally be defined during the interview process with the professional librarian. Now some may remember what these interview processes were like. They were an iterative process for the librarian and other reference professionals to utilize to determine with specificity what it was that the patron really wanted. This iterative process enabled the librarian to recognize which resources would best meet the inquiry’s needs. And they could determine if this was a tool in their collection or whether they might need to borrow something from another library. It would also assist in determining how quickly they could answer the question. This was a method that became refined over the years. These methods were part of the reference desk tool-kit; often with specific written instrtions to assist those on duty.

With the advent of early online tools it became even more necessary for the librarian to work with the patron to determine exactly what was requested. Why? Because the new tools in use were not inexpensive and demanded familiarity with the database(s) and search mechanisms to achieve results. Unlike today’s browser tools, one could not simply put in a series of terms to search. Boolean logic combined with unique search services might require construction of search instructions for separate databases. In fact, it was not uncommon for the same database to have different fields available depending upon the service providing it.

Another major element was the issue of cost control and budget monitoring weighed heavily. One did not frivolously utilize telecommunications, paper, and staff time. Costs had to be justified.

Patron Access to Electronic Health Records — What Does It Mean?

So what is the parallel in the field of electronic health records? What does patient access mean and what does it imply?

It means that now the professional, whether doctor, nurse practitioner, or dentist, is being placed in the position of making information available to the patient that has never been shared previously; except in verbal communications. While this category of data is identified as patient information, it has actually been anything but. It has historically been the healthcare provider’s information about the patient not to readily available to the patient.

Patient information encompasses a very wide berth. It could be the lab tests ordered, test results received, physician notes, consultation notes, opinions by the physician about the patient, consultant physician comments, and myriad other types of information. This information, while collected has not generally been shared with the patient. If a nurse made a notation in the patient’s file overnight for the physician to read in the morning it might never be shared with the patient. This was for the physicians eyes only. Other than the health professionals no one else may ever have been able to see the information recorded about the patient. There are many discussions being undertaken within the medical community around the topic of electronic health records about the sharing of patient information today.

Physicians may be reluctant to share all their notes and observations with a patient. There is concern it could undermine the confidence of a patient with their physician. There is concern the notes could discourage or alarm patients in certain settings. Each patient may or may not be able to cope with the full force of information held in their files. What information and when to share it is at the core of the discussion.

In addition, the issue of information accuracy is paramount to the discussion of electronic health records. It is deemed to be the greatest challenge facing the medical profession in providing patient information.

Without question the major hurdle is the provision of accurately matching patient health information with the myriad sources from which it would be derived. Again, determining that John Smith’s lab tests are properly assigned to the correct John Smith will be daunting. And what of names with spelling variations, e.g. Chinese name structures where the Western version of first name, last name is inverted. While it’s recognized that accurate matching and providing health information for patients has benefits such as improved patient care, improved patient safety, better efficiencies, improved fraud detection, better data integrity, the provision of this information has unparalleled challenges.ⁱⁱ

The Department of Health and Human Services Office of the National Coordinator for Health Information Technology has a privacy and security policy committee focusing on these issues exclusively. The goal is to provide patient access to health information within four days. The objective was once provision of a patient summary; it is now provision of patient access “on demand.” However the Health Information Technology (HIT) Standards Committee has yet to define the standards, what constitutes relevant information is unclear.ⁱⁱⁱ

What Other Players are in the Mix?

When libraries were challenged with this world of new technologies, there were several players that impacted how service was provided. There were telecommunications (until 1984, AT&T was the only phone company^iv), distributors such as BRS, Dialog, SilverPlatter, etc., publishers such as Wiley, networks such as SOLINET, PALINET, etc., which were all organizations that affected how data was distributed, organized, and how users were trained.

So who are the other players in the complicated electronic healthcare world? There are the myriad components of the healthcare community — physicians, hospitals, clinics, pharmaceutical firms, federal, state and local governments, laboratories, public health agencies, EHR vendors, and patients. Each has a voice in how this new environment will shape up.

What are the challenges being dealt with? Medication reconciliation, submission of immunization data, drug formulary checks, drug and allergy checks, submission of reportable lab data and reconciliation with orders, clinical decision support, and exchange of clinical information.

How is the National Health Information Technology initiative organized?^v It consists of Federal Advisory Committees that fall under two main umbrellas, Health IT Policy Committee and Health IT Standards Committee. Within these committees are various workgroups, such as clinical operations, privacy and security, implementation, vocabulary task force, meaningful use, information exchange, enrollment, governance, etc.

The committees are comprised of participants across the full spectrum of the healthcare community — physicians, business people, EHR vendors, healthcare unions, academia, legislators, public health agencies, nurses, hospitals, legal authorities, pharmaceutical companies, insurance companies, armed services, and clinics.

This Health IT Standards Committee fully recognizes that the challenges facing patient matching are critical. They acknowledge that it is not possible to achieve perfection in matching patient information but that every effort must be made to eliminate errors and misattribution. They concede that inaccuracy is not just a technology problem-it is also a people problem. They recognize that the quality of the data provided can prohibit accurate matching of information when that data is poor. There is no “one-size-fits-all” solution. And as the data becomes further removed from its source the challenges increase. Add to that multiple sources of data and the challenge multiplies even more. While the use of universal identifiers would be helpful it does not provide the final answer either.^vi

Conclusion

So where will Health Information Technology (HIT) lead us? Well, I believe the genie cannot be put back into the bottle. Health Information Technology is an advance that we as a nation, as patients, as providers, and as care-givers, need. As a mobile society we need to have our health information travel as readily as we do. As a technologically savvy society, we need to have health information be current, accurate and exchangeable. This last bastion of critical care information needs to move into the 21st century with all other content. We need to realize the cost savings promised, the improvement in healthcare foreseen, and the advances in managed patient care assured.

And finally, I recommend that we all tap into the information available through The Office of the National Coordinator for Health Information Technology. There may be a role we can all play.

References

About the Author

Debra Spruill is a consultant in the field of preservation with an emphasis on digital preservation. She was recently Director, OCLC Preservation Service Centers responsible for strategic, business development, operational, and contracting for its four Centers, including on-site locations. She was also responsible for client contracts. Most recently, Ms. Spruill was named to the Library of Congress ALTO XML Schema Editorial Board. Ms. Spruill is a member of the Unlimited Priorities team.

Written for Unlimited Priorities and DCLnews Blog.

Debra Spruill

A librarian walked into a doctor’s office looked around and saw the steel cabinets overflowing with paper files taking up valuable office space and turned away with a knowing smile. Then the Librarian said to the doctor, ‘Don’t worry, this won’t hurt a bit.’

Today, all across the country, doctors, hospital administrators, and myriad other healthcare professionals are wrestling with the challenges of transitioning from their traditional record keeping of countless paper files in color tabbed folders to the emerging electronic health records (EHR) requirements. This takes me back to the days when libraries were beginning the uphill climb to adapt their reference tools and methods to online databases and online public access catalogs (OPAC).

Looking Back at Changes for Libraries

In 1968, two key developments were underway that would later change the way libraries would function in the new information world. BRS, Bibliographic Retrieval Service, was underway as the Biomedical Communications Network (BCN) at SUNY Albany; and Systems Development Corporation (SDC) contracted with the United States Office of Education (USOE) for dissemination of educational information (ERIC). And the world is changing; by 1971, SDC created ORBIT and NLM installed it to support MEDLINE; ERIC is also offered publicly by SDC. The next year, Dialog becomes a commercial online service with NASA RECON, Nuclear Science Abstracts, and ERIC databases. i Unbeknown to librarians and their patrons the world over, these undertakings on opposite ends of the country would portend seminal changes to how information is provided and used going forward.

The Healthcare Community Begins Applying New Technology

In 2009, as part of what is known as the Stimulus Package (American Recovery and Reinvestment Act of 2009), the Federal Government included $19.2 billion to fund the conversion of medical records keeping from paper to electronic format to be interactive by 2015. ii While the technology of electronic health records (EHR) has been in practice for some years, for instance Kaiser Permanente in California began providing its patients’ electronic medical records some five years ago iii, most physicians and healthcare institutions have not embraced it. The major roadblock was the cost of making EHR a universally accepted reality. The Stimulus Package funding is intended to eliminate that barrier and pave the way for implementation of a national system for any and all healthcare providers receiving Medicare and/or Medicaid reimbursements to securely use and share health information. I will not entertain the political arguments for or against the utility of EHRs. The purpose of this piece is to present the similarities between the library/information field and the healthcare field in tackling the onset of technology to an established organization of information and tools.

So what are the commonalities between these two ventures? I find several—diversity of organization, patron/patient use, reformatting of existing formats, high cost of implementation, updating or new skillsets requirements, privacy concerns, and co-existence with existing methods. Let us explore each of these.

Diversity of Organization

The arrangement, pricing, and provision of information and information tools for healthcare providers are very similar to the challenges that confronted libraries—the issue of various organizational structures. Libraries are broadly grouped as public, academic, special and government types. But under these very broad umbrellas are many communities—public libraries that serve urban, suburban and rural communities; special libraries with diverse audiences such as medical, technical, scientific, and/or legal users; they might be in a corporation or be a standalone entity; their patrons may require special assistance, materials in languages other than English, provision of materials for remote use and several other profiles or combinations. The purpose of these organizations and the professionals that serve in them is the collection and provision of information to satisfy whatever the patron or users need. And their tools ideally should make it easy for them to meet these needs.

Likewise, a healthcare provider profile may be that of a single hospital or be part of a regional hospital network; it may be an ambulatory care center with no overnight patients or a long-term care facility; it may be mobile; it may be a teaching institution connected to a university with heavy research requirements; it may be a single doctor, a group practice specializing in a particular aspect of care or one that must prepare for an influx of new residents annually. Like libraries there are many profiles and characteristics that can exist. But the common link is the provision of healthcare to patients, whether in the office, in the hospital or clinic, on a schedule or in an emergency. And present in any scenario for the professionals in these facilities is the collection and dissemination of information to satisfy the need for timely and accurate patient care.

The Paradigm Shift

Both of these are long-standing services with tried and true systems in place as well as basic skills that have stood the test of time. And, like other long-standing services, at some point the basic assumptions are shaken up, and new methods and/or technologies impact the profession.

In the library world, the introduction of online databases was truly revolutionary. It changed how tools were organized, produced, disseminated, accessed, and used. Of course, the timeline changed again when the computer networks were linked around the globe and the Internet became a tool of communication and information sharing. The Internet has its origins in the 1960s as a United States military research tooliv—by the mid-1990’s, it became a commercial entity.

Healthcare has undergone its share of shakeups, too, particularly in the method of care and the growth of fields of specialization. Healthcare often requires a team to treat a patient where one general practitioner used to serve the purpose. The tools employed in healthcare have truly changed—no more leeching or bleeding of patients, no more exploratory surgeries. There are magnetic resonance imaging (MRI) technology, computed tomography (CT scans), dialysis treatment at home, and minimally invasive surgical procedures. Preventative care is highly recommended to provide a treatment at the earliest stages of serious illnesses with the goal of avoiding life-threatening effects.

Yet, with these cutting edge methods, most physicians and hospitals still utilize paper files and require their patients to complete paper forms. We go to our many physicians and complete similar forms providing the same information each time—name and address, vital statistics, spouse, insurance, health history, family health history, etc. Countless hours are spent collecting and filing this information. Healthcare facilities have valuable real estate taken up locally and in remote facilities just to store these paper documents. And then there is the staff time too. Filing, gathering when a patient comes in or is brought in, and goodness knows if the patient is unable to communicate—then valuable time is lost trying to guess what the patient’s history is, and whether special care is required, for example for allergic reactions.

Changed Skillsets

One of the major concerns for the library profession was the new skills required when reference tools and sources were modified to fit the online and Internet environments. I will address the impact of the online tools because they were most disruptive at the time of their introduction. While the Internet offered its challenges, it seems that the providers of the information (publishers, music producers, studios, and authors) appear to be more severely impacted than the users.

The availability of reference tools online meant that the library profession had to adjust more quickly and radically than had previously been required. The predictable, timely arrangement and publication of known sources usually in book or serial format was suddenly uprooted. While early online search methods were clunky with the early technology of acoustic couplers and telephone lines, CRT terminals and the DOS operating system, they still provided more flexibility in providing more concise results than traditional print tools. Queries could be posted combining search terms—and, or, not—and searches could be saved and combined with new searches, then, the results could be printed and handed over to the requestor along with the cited materials usually photocopied from the identified sources.

These tools and database collections required new skills particularly in the area of search methodology. Vendors who wanted their products used had to provide training programs, printed documentation, and telephone help lines. User groups and networks sprang up all over the country and thousands of air miles were travelled to provide and take instruction. New occupations of search and topical specialists sprang up.

The healthcare profession is undergoing a similar transformation as their content technology tools are evolving. The U.S. Department of Health and Human Services (HHS) has created the Office of the National Coordinator for Health Information Technology (ONC) to coordinate the national efforts to implement health information technology (HIT) and the electronic exchange of information.v The mission of the ONC is promotion of the development of a nationwide HIT infrastructure that enables the electronic use and exchange of information; to provide leadership in the development and implementation of standards and the certification of HIT products; coordination of HIT policy; HIT strategic planning; and to establish the governance for the Nationwide Health Information Network.vi

Interestingly, libraries, by their nature, were eager to share their new methods and tools. In fact, new occupations began with librarians being employed by online database producers to research, develop, and design new tools, revamp existing products, and collect information from libraries about how they would like data provided to them.

The healthcare profession is doing this in a very concerted way, now, through the ONC. While the library profession had a structure in place to train in these new tools, the healthcare profession is in the position of having to build such a network. While physicians, nurses, and their support staff have been trained in using new computer-assisted tools, the people who input and manage patient information may not be as astute collectively. Of course, there are early adopters that will have their staff trained in whatever software and hardware is being introduced at their institution, but a formal program has not existed nationally for training in Health Information Technology—until now.

The ONC has initiated an ambitious program of workforce training to assure a solid foundation of personnel that can satisfy the future needs of the public health.vii This program is establishing a set of operations such as the State Health Information Exchange Cooperative Agreement Program to facilitate development of health information exchange capabilities between healthcare providers and hospitals; Health Information Technology Extension Program to provide technical assistance and best practices guidelines for healthcare providers.

In addition to these support programs are education and training tracts to assist preparation of a new workforce. Specifically the Community College Consortium to Educate Health Information Technology Professionals to quickly create HIT training and education programs at Community Colleges or to expand existing programs. The training time-frame for these non-degree programs is 6-months to meet the urgent need to provide a trained workforce. Grants are also being made available to develop Competency Examinations to certify those that complete non-degree programs. Likewise there is an Assistance Program for University-Based Training to prepare an adequate number of HIT professionals. Both of these programs are being supported by a set of Curriculum Development Centers providing grants to institutions of higher education in the development of HIT curriculum.

Privacy

A critical issue that was much discussed when online database tools were developed was privacy. Patrons were accustomed to going to their library and for the most part locating materials they wanted personally, even if they interacted with staff to identify what they needed. Initially, with online databases this direct patron access did not exist. If you wanted a query conducted using an online database, it meant submitting requests—either verbally or often in writing—to information professionals who would process them. In certain settings, it was necessary for the professional to keep notes to properly charge the costs back to some cost-center or user. Naturally users, particularly in public libraries, were very concerned about their privacy. Who else would know what they were searching and why—and would the information be shared? These concerns did not lessen with Internet access in public places. What could be seen by children walking past a screen, what sites were being sought in academic libraries, and who would have access to that electronic trail continue to be discussed. Issues about surveillance, “Big Brother,” were discussed. Privacy policies were developed with the purpose of protecting the computer users, particularly in public spaces, and casual observers, e.g. children, when materials displayed may not have been appropriate.

And nowhere is privacy of greater concern than around the topic of patient information. The impact of insecure health information is fraught with issues such as exposure to employers, families, partners, and communities. The provision of the electronic transmission of health information by a healthcare provider, health plan, or clearinghouse is being guided by the HIPAA Privacy Ruleviii and enforced by the Office for Civil Rightsix. Additional steps are being developed to build upon requests for comment to implement the Health Information Technology for Economic and Clinical Health (HITECH) Act.

While HIT will assure the exchange of information for the clinical practitioner it will also provide access to information for patients. This is a major adjustment in the provision of healthcare in this country. Previously health information was consigned to be a physician’s or hospital’s domain. HIT will assure that patients have access to parts of their health history, too. This has been met with some resistance by the healthcare professionals, especially regarding notes and other observations made in the files for their eyes only.

The bottom line is that privacy in the healthcare arena is a serious factor and will require careful review.

The End User–To Be Continued

The library community was eventually faced with how to make its previously closely-held access tools and resources available to its patrons, even prior to the Internet. For centuries the librarian was the gate-keeper with special training in the resources available. Suddenly, with the advent of online databases, computer advances, and ultimately the World Wide Web, the barriers between the end user and the information were gone.

The healthcare profession is facing that dilemma with the advent of EHR. Patients will be able to access information previously kept from them.

More about this to come.

References

About the Author

Debra Spruill is a consultant in the field of preservation with an emphasis on digital preservation. She was recently Director, OCLC Preservation Service Centers responsible for strategic, business development, operational, and contracting for its four Centers, including on-site locations. She was also responsible for client contracts. Most recently, Ms. Spruill was named to the Library of Congress ALTO XML Schema Editorial Board. Ms. Spruill is a member of the Unlimited Priorities team.