Written for Unlimited Priorities and DCLnews Blog.
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 companyiv), 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
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.
i. Bjorner, Susanne, and Stephanie C. Ardito. “Online Before the Internet: Early Pioneers Tell Their Stories.” Searcher June 2003. www.infotoday.com/searcher/jun03/ardito_bjorner.shtml (accessed October 7, 2010)
ii. U.S. Department of Health and Human Services, The Office of the National Coordinator for Health Information Technology, Health IT Policy Committee: Recommendations to the National Coordinator for Health IT, healthit.hhs.gov/portal/server.pt/community/healthit_hhs_gov__policy_recommendations/1815.
iii. “HIT Exchange discusses EHR certification with CCHIT Chair Karen Bell, MD, MMS,” EHR Decisions, ehrdecisions.com/, March 4, 2011
iv. Wikipedia contributors, “Bell System divestiture,” Wikipedia, The Free Encyclopedia, en.wikipedia.org/w/index.php?title=Bell_System_divestiture&oldid=414141380 (accessed March 15, 2011)
v. U.S. Department of Health and Human Services, The Office of the National Coordinator for Health Information Technology, healthit.hhs.gov/portal/server.pt/community/healthit_hhs_gov__home/1204
vi. U.S. Department of Health and Human Services, The Office of the National Coordinator for Health Information Technology, Health IT Policy Committee: Recommendations to the National Coordinator for Health IT, healthit.hhs.gov/portal/server.pt/community/healthit_hhs_gov__policy_recommendations/1815.
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.