Informatics Success Story - Herman R. Menck, BS, MBA, C.Phil, FACE I m not sure I think of myself as an Informatics Success Story. I ve learned a lot, but no matter how much I learn, it seems there is always another half to learn; and everything keeps changing. My undergraduate work was a bachelor s degree in Mechanical Engineering from Purdue (with honors). Before entering the service I also completed an MBA from Northwestern. Both schools were ranked top-10 in those majors, which seemed important to me at the time. I was 22 years old, and thought I would be hot stuff, like my father. I worked on missiles as an engineering teacher of the Royal Air Force of England. At first it was quite exciting for a young bachelor, but over time it occurred to me that I did not want to spend my life supporting our military effort, important as that may be. The missile work contained lots of electronics, including early computers. 1. When and how were you introduced to Informatics? In my early aerospace work (1960's), I supported and trained on what we called Ground Support Equipment of missiles. These electronic bays of ground support equipment included analog and digital computers and various pre-cursors to computers. I was significantly taught electronic and early computing devices. I was drawn into what seemed to me to be statistical medicine or epidemiology. While working analysis of cancer patterns by site, by ethnicity, by sex, by age, by social class, by occupation and by industry, I started working for a central cancer registry. This became the passion of my life. I was obsessed. 2. How has Informatics impacted your day to day responsibilities as a Cancer Registrar? In general, my education, background and interest led to my work in the management/supervision aspect of cancer registration. I took assignments as an abstractor, and follow-up person, but they were secondary. I was active during the early introduction of business computers, sequentially mainframes, minicomputers and the personal computers, to cancer registration. Besides using computers for straight-forward tape-oriented file management, I did a lot of epidemiologic analysis of populationbased data using such languages as FORTRAN, PL/1, and BASIC. There was an obvious need for computer training of registrars, and Cynthia Creech and I got an early American Cancer Society grant to do that. Since that time helping registrars gain confidence in using computers has been an important part of my career, both paid, and volunteer. The impact of this computer emphasis on my career path is not clear, but it is where I passion lay. 3. What education, on the job, and professional aides have your used to gain a better understanding of Informatics? My academic training includes completing a minor in Computer Science, as a part of my Doctoral Program at UCLA. I was trained as a computer engineer at RCA Systems (BAL, COBOL, FORTRAN). I self trained on QuickBASIC and SPSS, and used these for years in analyzing data, and in implementing and supporting data management and analysis systems for hospital and central cancer registry systems.
4. What are, and have been, your greatest challenges regarding Informatics? Keeping up with technological change; learning and gaining experience with new programming languages and computer facilities. 5. Is Informatics important in your professional life as a registrar? Yes, computer planning and use has become ever more important in virtually all aspects of cancer registry processing. In my volunteer work, I have sought to contribute to the training of registrars in computerization. 6. What advice would you give cancer registrars regarding Informatics? Study various Informatics training resources provided by NCRA. These include the Guidebook on Informatics (NCRA website), and Informatics chapters of Cancer Registry Management: Principles & Practices for Hospitals and Central Registries. Seek out computer applications within your registry, and become familiar with using them. Look up words and concepts that are new to you as they come up in your work. 7. Describe what you consider an innovative use of computer hardware/software in your registry to solve a data Collection/analysis/reporting problem, management problem, or communication problem. Include: A description of the problem and the solution. A recent help in case finding for central registries has been implementation of electronic pathology reporting (epath). This includes setting up a screening and transmission system from the hospital pathology Laboratory Information System directly to the central registry over the Internet. The central registry receives cancer path reports automatically. 8. Are you willing to participate in a phone interview that may be used in a panel discussion article submitted to the Journal of Registry Management on the opportunities and challenges that electronic health records present to cancer registries? Yes.
Informatics Success Story - Laura L. Vondenhuevel, BS, RHIT, CTR Asst. Tumor Registrar, Wright-Patterson Medical Center What education, on the job, and professional aides have your used to gain a better understanding of Informatics? When I was deciding how to proceed with my education, the next step was a bachelor s degree. I was very uncertain about what sort of degree I would choose as I wanted to continue in health information management but I also wanted to gain a better understanding of information technology. Information technology IS the future of health care and in turn health information management and cancer registrars. Cancer registrars have already been ahead of the curve when it comes to information systems as electronic registry software has been around for many years to assist in data gathering and reporting. I have always been considered tech savvy by myself and often help others in getting something started in an electronic format and I decided to build on that for my next educational goal. I began my search by looking at information technology degrees but that was way more IT information that I felt I needed currently in my day to day job. It was then I found the degree program I eventually settled on, a Bachelor s of Science in Health Administration/Health Information Systems at the University of Phoenix, and that I could complete online. I started the program in December 2009 and completed my classes in April 2011. The program was very similar to a traditional health management or health information management degree program except I completed 15 credits or 5 classes in information technology. These included classes on systems analysis and design and IT project management. All of my classes helped me better understand the processes that go into place for any information technology initiative. I feel I will be better prepared for the next set of data standard changes, helping to communicate our needs as registrars to the IT people that will help build the software for tomorrow. Being open to the potential that information technology and informatics offer our profession but also to improve our data collection efforts is the future that I look forward to. Information Technology in Healthcare Samir Shah BS, CTR Annapolis, MD A group of servers/computers structured to store, protect, calculate & disseminate recorded information is informatics. Today s growing world of technology has a lot to offer and demands understanding and importance of informatics in innovation. Healthcare informatics is the same for medical/clinical information, as this information is very personal to every individual HIPAA (Health Insurance Portability Accountability Act) has outlined the much needed protection and controlled dissemination of such data, Penalties and Accountability for violation of privacy have been set in great detail. On the other hand HIT (Health Information Technology) plays an
important role in managing Administrative and Financial systems with the accuracy to predict the trends in population and its needs, hence providing the institution chance to grow with the community. EMR/EHR (Electronic Medical Record/Electronic Health Record) is the form of Health informatics in play. Applications and other Software programs provide the necessary data to be recorded and quarried. Managing and monitoring the Production, Best Practices, work flow, Timeline, Quantity and Quality. Nonprofit organizations like CCHIT (Certification Commission for Health Information Technology) are playing a leading role in standardizing the new practices of collecting healthcare data. Establishing a universal and programmatic data elements table both required and elective have ability to communicate effectively and efficiently between different vendor driven software platforms. Provide transfer of healthcare information between institutions and practices with much needed privacy and security. As we better understand the use and implementation of Informatics in Healthcare new emerging technologies like speech recognition, Natural Language Processing, Data element recognition, Web applications etc, are not just around the corner, In fact have been adapted as daily practice at most leading Institutions and practices. Cancer Registry being the storehouse of Cancer data in a facility is a trusted source for monitoring Volumes, best Practices even financial aspects of the Cancer Program. Health Informatics in the form of Registry software has advanced with capability of recognizing data elements, missing data and even identifying fields to be reviewed prior to completing or submitting an abstract. Efficiently and securely transfer data to State and National Registries. At my hospital (AAMC) with the help of outstanding HIT (most wired 2010) and an OAA (Outstanding Achievement Award 2008) winning team the Registry s ability to not only participate in ACoS, NAPBC, QOPI, & STS but acquire the accreditation and certification with outstanding results. The registry plays an important role year round fulfilling the requirements and exceeding expectations with honor and appreciation.
Author: Nancy Cole Informatics Success Story When and how were you introduced to informatics? I came to work at a state central cancer registry nearly ten years ago. It was my job to establish reporting mechanisms for non hospital facilities so they could begin to report cancer cases. I needed copies of electronic facility lists to send informational mailings, such as for nursing homes; when I received the data from the department of health found I could not easily use their spreadsheet. The address information was all in one cell, so the columns had to be manipulated so that I could merge the facility name, street address, city & zip code into separate fields for WORD documents. Although I didn t realize it at the time, that was my introduction to informatics. How has informatics impacted your day to day responsibilities as a cancer registrar? Much of my job has involved dealing with informatics issues. How do you get information from a paper pathology report into an electronic format that can be automatically streamed into a database? What if there is not field for a facility to capture race and ethnicity? Or if there is a field, how do you know what their coding system means? Do they have more than one race code field, or can they only capture one race? How do you change information on a spreadsheet into a NAACCR layout so that it can be imported into your database? Interoperability is a major issue with cancer informatics. National efforts are ongoing to ensure consistency with national standards related organizations. Standardization is crucial as we continue to advance toward increased automated reporting from healthcare groups such as pathology laboratories or physician offices. What education, on the job, and professional aides have your used to gain a better understanding of informatics? Many years ago I audited a couple of health informatics classes so that I could begin to understand the issues I was dealing with. Most of my education though has been through my involvement with national workgroups as they deal with informatics related topics or personal experience on the job as we try to determine the best ways to incorporate data from a variety of sources. What are, and have been, your greatest challenges regarding informatics? Affecting change is a slow process, especially when so much of it occurs on the national level. Is informatics important in your professional life as a registrar? Our cancer registry would still be in the dark ages if it were not for informatics. What advice would you give cancer registrars regarding informatics? Cancer registrars need to embrace health informatics. It will continue to be a driving force in the way we collect, process and report data. Although complex, in the end, it should allow CTRs to perform their jobs more efficiently. Describe what you consider an innovative use of computer hardware/software in your registry to solve a data Collection/analysis/reporting problem, management problem, or communication problem. Include a description of the problem and the solution. Several years ago a national workgroup was formed to develop mechanisms/standards for pathology laboratories to create and send electronic files to central cancer registries. We were very excited about this possibility, but realized we had no place to store or process the data files once they arrived. The CDC s National Program of Cancer Registries (NPCR) had already begun creating central cancer registry software for other uses and decided to develop one for the storage and processing of e path files. That product, emarc is now in use in many state registries
and allows staff to import HL7 files which are then mapped to the NAACCR layout. Several fields are coded automatically, such as primary site, and a registrar can actually generate a partially completed abstract from the information provided by the pathology lab. These records may then be exported for further processing. Since thousands of biopsies are now performed outside the hospital setting, accessing the pathology reports in an electronic manner is vital to gathering complete cancer incidence data. Are you willing to participate in a phone interview that may be used in a "panel discussion" article submitted to the Journal of Registry Management on the opportunities and challenges that electronic health records present to cancer registries? Possibly.
Featured Success Story Brad Kirby, MPH CTR, Cancer Information Manager, Sentara Health System I think informatics has always inherently been part of the Cancer Registry so it's a bit difficult to pinpoint when and how I was introduced to it. When I first joined the Cancer Registry in 2002, the registry where I worked was still using a lot of paper based methods, such as manual review of pathology reports that were printed daily, 350 400 follow up letters printed a month, paper medical records, and paper schedules/evaluations for tumor boards. While paper medical records were the primary source, some of the documentation was stored electronically path reports, history and physicals, operative notes specifically. At the time, we didn't have dual monitors so the easiest way to handle an abstract was either to write out the high points of the abstract on paper and then abstract them or print the documentation from the electronic application thus defeating the purpose of having an electronic application. Having a Master's Degree in Public Health did not necessarily help with the informatics challenges, but did help in understanding the need for change and the ability to hypothesize ways to improve care and workflow. Being able to examine an opportunity for process improvement and structure a process (whether it's an electronic solution or not) is something that is vital in the cancer registries, especially as the registry moves from a state reporting tool to more of a quality improvement tool. In 2008, I changed jobs and moved from a Cancer Registry supervisor of a 1200 case/year facility to a Cancer Information Manager for a 6200 case/year 7 hospital health system. While my role was still to manage the cancer registries at the 7 hospitals in the Network, it was also to provide quality data to administrators/physicians to improve cancer care in the community. Being that most of my knowledge was surrounding the cancer registries that were the first place we looked to track quality indicators. However, at this time, we had 6 different hospitals with the same software vendor but the data was not unified in any way. This led to a lot of redundancies in both abstracting and reporting. In 2009, we transitioned to a new software system that provided the ability to 'share' abstracts, increasing abstracting efficiencies and eliminating most of the redundancy in having to report the same case for two different hospitals. Once the database was unified and we were accredited as a Cancer Network by the Commission on Cancer, it made it much easier to collect and compare data facility to facility using the cancer registry. In 2009 2010, our hospital system transitioned to EPIC as its electronic medical record. With this transition, the ability to acquire data became more evident. We were still printing pathology reports and manually reviewing them at this point approximately 800 1000 sheets of paper a day across the Network. Our Information Technology team approached us about a software product called onbase that would allow for us to review pathology reports on the computer and sort and group them into piles for reportable cases vs. non reportable cases. They could then be accessioned utilizing dual monitors and the pathology report would never have to be printed. You can imagine the cost savings on ink and paper, not to mention all of the fingers that were saved from papercuts! Moving towards electronic health records and automating data certainly has its pros and cons. We have all benefitted from easier access thanks to EMRs. Electronic staging forms, longitudinal storage of information, access to some outpatient charts (medical oncology, family practice), and easier access for follow up have been huge advantages. Meanwhile, the utilization of numerous different databases has
lead to registrars having to go 5 10 places to get the information that might have once been housed in 1 chart. Do you ever have a hard time remembering all your usernames and passwords? Another drawback is that while documents are stored electronically, they are still not stored discretely. This still leads to manual review and abstraction of the data instead of moving more towards automation. The data is more complete now than it was with the paper record, but there is still plenty of room for improvement. In 2011, I have approached our IT team and proposed we work together to make follow up easier. The goal is to be able to search for the most recent date of last contact within our data systems and automate the date and vital status input into the registry. Cancer status will still need to be manually reviewed and the case would be flagged for review to ensure that is not forgotten. The entire Cancer Registry database will be compared with the EMR system monthly and a report will be created for review. While we are not there yet, I have confidence that we will be able to achieve this increasing efficiencies for our follow up registrars. One of the largest challenges in regards to our hospital system and informatics is the coordination of disparate databases when trying to use data for quality improvement. Right now, our hospital system is tracking approximately 40 quality indicators using the cancer registry as a source. Most of these have been implemented and tracked using user defined fields in our cancer registry software system, ONCOLOG. As stated previously, these are reviewed by a site specific registrar that reviews notes from multiple systems to correctly enter the data in these site specific quality indicator fields. It might be easiest to convey the difficulty if we look at an example of a breast case and where informatics could potentially be used to make things easier. Example Screening mammogram: Breast cancer patient comes in with a screening mammogram. Screening mammogram is housed in RADNET (crosses over to EPIC) and the report is mostly text. BIRADS score at the bottom of the radiology report was a 0, recommending a recall/follow up. Diagnostic mammogram: Patient returns for follow up and has subsequent diagnostic mammogram. Diagnostic mammogram is housed in RADNET (crosses over to EPIC) and the report is mostly text. BIRADS score at the bottom of the radiology report was a 4, suspicious, recommending biopsy. Stereotactic Biopsy: Patient returns for stereotactic biopsy. Biopsy is done and tissue is taken to lab. Lab banks tissue in biorepository. Path report is created in Cerner Legacy (all ASCII text) and that crosses over to EPIC. CAP Protocol template is manually entered for compliance with CAP standards. Patient has infiltrating lobular carcinoma. ER+ PR+ HER2 Surgery: Patient returns for lumpectomy and sentinel lymph node biopsy. Lumpectomy and sentinel lymph node biopsy done and tissue taken to lab. Lab banks tissue in biorepository. Path report is created in Cerner Legacy (all ASCII text) and that crosses over to EPIC. CAP Protocol template is manually entered for compliance with CAP standards. Patient has 2.0 CM infiltrating lobular carcinoma, ER+, PR+ HER2, 0/2 sentinel lymph nodes positive. Negative margins. pt2pn0pmx. Patient recommended for radiation.
Radiation: Patient goes to radiation therapy department and receives 5040R/28F with 1000R/5F boost to breast and axillary lymph nodes. Treatment dates and data housed in IMPAC MOSAIQ. Patient referred to medical oncology for evaluation of chemotherapy/hormone therapy. Medical Oncology: Patient goes to medical oncology and they decide not to do chemotherapy. Decide to go with hormone therapy specifically arimidex. Patient is given prescription for arimidex. Treatment date/data as well as cancer status housed in separate outpatient medical oncology record. Follow up/survivorship/outcomes: Patient is in database and followed by cancer registry. Cancer Registry is required to follow up with patient within 15 months. Recurrence info and survival are updated if found. Various physicians, databases, and patients are contacted to get info. The areas that could be automated in this example are as follows. Demographics Screening mammogram BIRADS Score Screening mammogram date Diagnostic mammogram BIRADS Score Diagnostic mammogram date Type of biopsy Date of biopsy CAP Protocol scientifically validated elements histology, grade, ER status, PR status, HER2 status Type of surgery Date of surgery Clinical stage CAP Protocol scientifically validated elements histology, grade, ER status, PR status, HER2 status, margin status, tumor size, lymph nodes positive, lymph nodes examined, pathologic T stage, pathologic N stage, pathologic M stage, pathologic stage group Radiation treatment dates Radiation treatment dose Radiation treatment site Radiation oncologist stage Date prescription given for hormone therapy Type of hormone therapy given Date of last contact with systems involved Patient s vital status as according to the databases or according to social security death index Patient s cancer status - through outpatient medical oncology record The only areas that might be difficult to automate and ensure accurate data would be the outcomes/follow up/survivorship data due to a wide array of factors. While this is a long winded example, I would hope everyone can see the role of informatics in the process. While the automation would be a fantastic endpoint, it's not necessarily something that can be dumped into the registry without review. Validation and quality review is still going to be necessary because computers cannot take into account all of the rules (FORDS, MPH, etc.) incorporated into an
abstract. While the registry houses the majority of these fields demographics, primary site, histology, treatment, outcomes measures it also works on a 6 month delay and because of this, it is often discarded as not timely enough to identify potential patients for clinical trial accrual, outcomes research, or other research related endeavors. This is a challenge that is going to have to be overcome in the coming years if the registry is going to move towards being more of a quality improvement tool. In the future, the role for informatics is only going to increase within the registries and within cancer programs across the country. The Commission on Cancer, the National Accreditation Program for Breast Centers, and the National Quality Forum are endorsing quality indicators for cancer and the most likely place to track these are through the Cancer Registries. With the increase in new fields to track these indicators, acquisition and automation utilizing informatics is going to be key in decreasing the burden on registrars. The only advice I'd have for registrars is to focus on thinking outside of the box in regards to what the registry can be used for. Don't hesitate to include your information technology team in discussions if you come across a data challenge. Utilize user defined fields and set up studies/projects with your physicians to address concerns or illustrate quality care within your hospital