April 16, 2007

Leap of Faith
By Herman R. Menck, MBA
For The Record
Vol. 19 No. 8 P. 20

Rumblings of earthshaking changes have certified tumor registrars pondering their future in an electronic environment.

According to an informal e-mail poll of 40 IT experts and certified tumor registrars (CTRs), the move toward an electronic environment is picking up steam, causing anxiety, and sparking workload, technical, and morale concerns.

What does the future hold for cancer registrars? How should they best prepare for the inevitable changes? These questions arise in the context of existing workload challenges. The exact nature of the changes is difficult to forecast, causing uncertainty and discomfort. However, the changes are also providing new opportunities for registrars to translate their knowledge and skills into the vocabulary and systems of the electronic health data environment.

Technological change is not new. In the last several decades, a series of changes has virtually reformulated many aspects of registration, including the transition from mainframes to PCs and Web computing; the emergence of transportable registry software from vendors; data and data edit standardization; digitization of data sources; insinuation of computers into virtually all registry processes; an increase in IT consulting and staffing; and increased security and privacy concerns involving e-mail attachments, conference calls, and cell phones.

There are different kinds of registrars doing various tasks. Even though registrar job descriptions are diverse, these changes can be expected to affect everyone in the profession, albeit differently.

As registrars face the future, a basic question to ask is: Will the total electronic medical record (EMR) and related computerization prove to be a labor-saving process, improving data quality and supporting improvements in the quality of care, or an unpleasant and difficult diversion, requiring intensive learning, constant updating, fine-tuning, and support?

What Does the Future Look Like?
Electronic casefinding: Increasingly, the hospital registrar will receive a digitized pathology report automatically transmitted to the registry at the time of pathology sign-off. This will automate most casefinding. Central and state registries will also increasingly receive pathology transmissions directly from hospitals and stand-alone pathology laboratories.

Online access/abstracting to the EMR: This is the driving change of the future. It assumes the organization’s ability to provide secure, remote access to the EMR. Ultimately, registrars will have access to the total EMR from their computers and will abstract without a paper medical record.

Whether the cancer registry patient abstract will become part of the medical record—as well as be maintained in the registry’s standalone database—is not clear. If it is also maintained in the EMR, then other users, including clinicians, can potentially access the abstract. Access to a comprehensive EMR will facilitate easier follow-up and lead to more registrars working off site or at home.

Online abstracting is already being performed at some facilities. In the poll conducted for this article, several early adopters expressed their thoughts on the technology:
• “In some respects, it makes it easier, as you do not have to make up lists of charts to have pulled in medical records or pull them yourselves and cart those heavy records to your office and back.

“In other respects, it can be more difficult. With a chart in front of you, you can mark the items of importance and flip back and forth as necessary, and that is quick. With the electronic record, you have to use several keystrokes to go from one section and a particular report under that section to another.”

• “Two-screen workstations become a very convenient, almost necessary tool.”

• “Some of the medical records are not directly entered into the computer. Further, reports from the lab, path[ology], x-ray reports, H&P [history & physical] and op [outpatient] are all scanned piecemeal. But with the computer, you have to ask to view one page at a time. There can be over 30 pages in some of these scanned records, and you may only be looking for one particular item, so that can waste a great deal of time. The scanned records are not always in the same order either, so you cannot assume that if you do not find it where you think it should be, that it is not there. These scanned records are PDF format, of course, and sometimes the system is slow to bring up Acrobat to view the records.”

• “We have tried to download by diagnosis. This feature took forever for IT to complete.”

• “We are waiting for a download of pathology reports, but that is on hold until the pathology department gets a new program. They are bidding on that now.”

• “We want to take a file of patients and compare it to the system master file for good follow-up dates. We were told by IT that they have many more projects of more importance. You need an IT department that is interested in you, the registry department.”

• “We are now exporting demographic information from the radiation software to our system and eventually hope to include treatment information. We have access to the radiation software program and the medical oncology program from our desktops. Currently, we are unable to export data from the medical oncology office, but that, too, will become a reality down the road.”

• “Our radiation oncology department maintains their own patient medical records, and this will be going electronic soon, which will make abstracting easier for us.”

• “In the future, data entry will become more efficient and complete as the ability to export information is made available. Although this process will decrease the time needed for direct data entry, abstracting will continue to require a high level of knowledge and skill.”

• “The digitized medical record facilitates a search capability vs. manual searching of paper hard copies.”

Computer-assisted abstracting: Some predict that eventually elements of the abstract will be automatically populated from the EMR and the autocoding of topography, morphology, stage of disease, and other data elements may be computerized. While some research in semantic analysis and synoptic reporting is being accomplished, these predictions may be premature. Recent research on semantic analysis of pathology reports shows that detection of cancer diagnoses may be difficult, but it is possible. However, choosing the primary diagnostic codes is not yet established.

List (synoptic)-oriented medical records are more amenable to efficient and automatic abstracting. Research on converting major elements of the clinical world—from use of medical dictation to structured and list-oriented records—is ongoing. Notable is the development of protocols for list-oriented pathology reporting of 44 forms of cancer. It can be expected, however, that this evolutionary process, if accomplished and universally accepted, will play out over several years as pathologists, other physicians, and allied health personnel change their primary method of recording medical events.

Potential for timeliness: Rapid notification of patient diagnosis is needed for surveillance purposes and epidemiologic research, but patient care concerns require record access concurrent with and after completion of treatment regimens. As new treatments are completed, the patient record may warrant updating. Presently, the times scheduled for reporting reflect a compromise with the various needs: reporting once at diagnosis, again after first course of treatment, and annually for follow-up. The future may include a more time-layered cancer record with signal events being posted as often as they occur.

Increased data sources: In the future, it may become possible or necessary for the abstractor to use data sources that are not now easily used or normally considered due to a lack of requirement or precedent. These may include billing records, clinic logs, or frequent use of disease index input. These additional sources might be present within or outside the hospital setting. Additional prognostic indicators, morbidity data, test results, and risk factors are possible examples. There may be more crosstalk or networking by registry staff with other hospital systems and vice versa.

Elimination of separate registry systems: The increasing sophistication of EMR systems may eventually eliminate the need for separate registry databases altogether, allowing cancer information to be generated directly from the EMR through the use of data mining techniques or cancer data templates applied to the EMR database. The development of collaborative staging and case consolidation algorithms foreshadows this type of data processing. The identification, definition, and collection of cancer information would be limited by the content of the EMR rather than the cancer abstract per se.

EMR-assisted follow-up: Easy access to the EMR will facilitate the search for any recent patient contact.

Secure Web-based data systems: Historically, cancer registry data systems were developed as standalone, home-designed configurations. More recently, statewide and standardized Web-based systems have been developed for direct access by multiple organizations. This centralizes and focuses system design and support efforts and establishes greater interoperability, leading to potential cost savings and easier data sharing between hospital and central and state registries.

No national Web-based systems are widely used today, but it may be possible for hospital staff, and central, state, and national registry personnel to ultimately utilize one unified, standardized data system, similar to those used by banks, airlines, and other businesses. It is possible that this may even lead to abstracting of case information from physician offices by their own staff.

Web communication: Transmission of messages, manuals, manuscripts, data, and other written material will be increasingly digitized and transmitted via the Internet.

Voice recognition: Research and development of more user-friendly voice recording protocols continue. Similar to list-oriented records, these developments have largely been done outside the realm of health information. Although increasingly used in patient appointment systems and other phone-answering arrangements, it is unlikely to surface in cancer registration in the coming decade.

Security: The premise of the EMR is based on the assumption that adequate privacy and confidentiality have been achieved. Although abuses get periodic media coverage and hacking and phishing continue, national online systems, whether they are medical records, banking ATM, or airline reservation systems, are widely used, with the benefits usually outweighing risks. The need for strategic backup and restore procedures will become more important.

Software certification: The workability, reliability, and support of software is intangible. New software is problematic with uncertain delivery dates. Some new EMR systems and HIM software are undergoing a formal certification process. Some registry software suppliers may also start to use this process.

RHIOs and PHRs: Regional and national EMR systems have the potential to serve as alternative data sources for non–hospital-based medical care. Progress on the development of regional health information organizations (RHIOs) and personal health records (PHRs) has been limited, however, and their viability in the near future has not been established. This is another possible approach from which registries can collect physician office data.

CTR certification in Canada: Work proceeds on the development of Canadian certification, and it may become an important step in Canadian recruitment and retention.
Privacy/confidentiality laws in Canada: Similar to HIPAA in the United States, interpretations of privacy legislation in Canada—The Personal Information Protection and Electronic Documents Act—will influence future cancer registration.

What Are the Implications for Cancer Registrars?
Changing role: The job will increasingly move away from coding, abstracting, and data entry of the paper health record and toward forms of data management: monitoring, review, editing of digitized information with emphasis on quality control, and interpretation of the abstract data. A goal will be to better understand and improve the quality of care, which may eliminate the task of abstracting and increase data mining. As a result, registrars will need to adjust their job skills accordingly. Ergonomic issues will need to be actively monitored so that registrars don’t develop carpal tunnel syndrome or neck and eyestrain injuries.

Complex training: If the role of the CTR is changing, then training of the appropriate job skills will need to be strengthened. More computer user knowledge, including IT terminology, concepts, and methods, will be necessary for some registrars, while others may wish to learn facets of system administration, database architecture, security networks assessment of data sources, and basic database queries, such as Structured Query Language. Many registrars are already sophisticated computer users (Microsoft Windows, Word, PowerPoint, Excel, and Access; Adobe Reader; WinZIP; Internet Explorer; backup/restore; wireless), and will therefore have a solid base from which to expand their skills.

If, as expected, the data set keeps evolving and becoming more complex (collaborative stage, multiple primaries, and histology coding rules are past examples), an annual abstract or training may become more important. More training for evaluation of patient care may also be necessary.

Cost impact: Once established, online abstracting and follow-up from the EMR are expected to achieve time savings. There may be more data sources providing a greater wealth of data, which may prompt additional reviewing but result in a more complete abstract.

Other possible savings, such as those based on increased data system interoperability or possible use of a statewide or national Web-based registry database, would lower IT development and support costs but are less certain. Possible physician office reporting to state registries or regional healthcare information organizations and the resultant data availability also may significantly reduce costs. On the other hand, strengthening backup/restore procedures and understanding would increase costs.

Salary and workforce: It is unclear how registrars’ new role will affect salaries, status, and related issues. There is the possibility that new job skills will make it more difficult to recruit and retain enough qualified registrars and increase the status of and demand for working registrars.

Effect on vendors: Vendor software will be influenced by changes in the data set, the need for more online documentation, and the increased dependence on record linkage through EMR and regional interfaces. The realization of a single national cancer registry data system also used by hospital registrars would profoundly affect vendors.

Paperless: As hospitals move toward a more paperless work atmosphere, many registries may elect to substitute more electronic procedures for those which were previously paper-based.

Internet access: Many changes in the new electronic environment underscore the need for the working registrar, as well as management, to have user-friendly Internet access. Other access needs include the ability to download reference manuals and software upgrades and participate in online training. The computer and Internet are becoming essential to regular work processes much as the telephone did several decades ago.

Security audit/review: Every registry manager needs a straightforward understanding of his or her disaster recovery plan. As paper records fade away, backup and restore capabilities become a necessary protection against a possible loss of all registry records and files. The word disaster is used accordingly. The basic question is “how would the registry be reconstituted in the event of fire or theft?”

Backup/restore capabilities are sometimes provided by IT system procedures beyond the control of the registry. This delegates future responsibility for the registry to someone unfamiliar with the functioning of the registry—and whose work priorities are set elsewhere—and should be limited as much as possible and done with caution. Periodically performing an audit of restore capabilities may become a requirement.

Obstacles
The march toward electronic technology and EMR-related changes is not without obstacles that can cause delays—or worse. These include the tendency for organizations to be chronically challenged in their ability to plan and complete all IT projects. Organizations must also periodically renew their investments in large-scale systems as technology becomes obsolete, which may require total system redesign and conversion of legacy databases. Registry needs which require IT participation compete for resources with all other organizational needs. This is seldom positive.

Another obstacle to automation of registry efforts is the clinical reluctance to use structured forms and lists vs. dictation. In addition, there can be deep-seated personal and institutional inertia and resistance to change.

Five Power Steps for Registrars to Prepare for the Future
1. Keep abreast of IT and EMR changes.

2. Strengthen computer skills.

3. Establish a computer helper/mentor.

4. Think positively about a faster pace and volume of changes.

5. Develop and understand a prudent disaster recovery plan.

Help or Hindrance
Previously, this question was asked: Will EMRs and related computerization prove to be a labor-saving process that also improves the quality of data and care or a difficult, unpleasant diversion that requires much learning, constant updating, fine-tuning, and continuing support?

The answer is yes to both sides of the question. This is not a trick answer but a fact of life. The transition to an electronic setting will present short-term challenges and difficulties but will also result in long-term improvements and gains.

— Herman R. Menck, MBA, has been active in the management, computerization, and analysis of cancer registry data for four decades. His primary interests center on the methodology of cancer registration, patterns of cancer care and outcome, and the descriptive epidemiology of cancer.