SUMMER INSTITUTE IN NURSING INFORMATICS 2008: Building Connections for Patient-Centered Records
True to the title, the 2008 Summer Institute in Nursing Informatics (SINI) featured many speakers who presented information about patient-centered healthcare records. The ideas that were presented moved the concept from a view of medical data to a site that, based on the healthcare record, provides information that a consumer needs to promote a healthy lifestyle. Like prior SINIs, making a decision about which of the concurrent sessions to attend presented great difficulties. A bonus was the availability of handouts online so that attendees could follow presentations and obtain a bird's-eye view of those that they could not attend without violating the law that a body can only occupy one space at a time.
The opening speaker, Stanlie Daniels, RN, Deputy Chief Officer, Director of the Strategic Planning and Measurement Office of Patient Care Services Veterans Health Administration, discussed how the Veteran's Health Administration (VHA) is using informatics to provide patient-centered care. Her main thesis was that the goal of electronic records should be to use the clinical record to drive quality. She reminded us that technology is a means, not an end, with the goal being to provide high-performance, high-value, high-quality healthcare. Emphasizing the importance of electronic records, she stated that one in seven hospital admissions occurs because care providers do not have access to previous medical records, with the result that American healthcare is reactive, a safety net after a catastrophe. Ms Daniels reported that including health reminders that automatically order the pneumococcal vaccine for eligible patients reduced hospitalization for pneumonia by 40%, and alerts for the flu vaccine reduced hospitalizations for flu by 70%.
Roy Simpson, RN, C, FNAP, FAAN, Vice President of the Nursing Department at the Cerner Corporation, titled his presentation "Putting the Patient in Patient-Centered Care: What It Can Do." He emphasized that when data are not available at the point of care, care is based on the best guess. He stated that the current system is too focused on outcomes instead of the process. If structures and process are not in order and the outcome is good, it is pure luck. Patientcentered care explores the main reason for care, seeks new information, finds a common ground for the problem, and enhances healthcare by creating a positive relationship between the healthcare provider and the consumer. This requires that patients understand the reasons for treatment, that clinicians have sufficient time to see patients, and that there is a reordering of healthcare to focus on quality. Unfortunately, the focus on the bottom line in the business model means that the main person with a stake in quality is the patient. Nurses, who provide 97% of direct patient care, can do something about this by working to ensure that technology is used to educate and empower patients, improve the clinical workflow, and increase quality outcomes. He touched on the fact that nurses are still voiceless and said that this can be attributable to many factors including the fear of being accountable and a belief that we are not entitled to a voice. To earn a voice at the table, we should find our voice and be the voice of the patient. Mr Simpson ended by challenging the audience to move from a Ptolemaic view of the universe, in which the earth (healthcare provider) is the center of the universe, to the Copernicus view, in which the sun (patient) is the center of the universe.
Clement McDonald, MD, Director of the Lister Hill National Center for Biomedical Communications at the National Library of Medicine (NLM), discussed the NLM's personal health record infrastructure. Dr McDonald pointed out that the NLM has an enormous and rich vocabulary system and tools for using them. One, RxNorm, has codes for standard names of clinical drugs (composed of codes for active ingredient + strength + dose form) and for dose forms as administered to a patient. It provides links from clinical drugs, both branded and generic, to their active ingredients, drug components (active ingredient + strength), and related brand names. For prescription writing, they have developed a subset of RxNorm by thinning and tweaking it, named Rx-Terms. Some of the tweaks include shortening hydrochloride to HCl, using "tall man lettering" in which letters that may confuse the user are written in upper case, and adding synonyms. The index is also structured differently from RxNorm using levels, the first level being the name of the drug and the second being the strengths and dosages. Further needed are subsets for problems and surgeries that are thinned in a manner similar to RxTerms. Other codes that can support the personal health record are LOINC (Logical Observation Identifiers Names and Codes) for measurements and observations, CDC for vaccines, and SNOMED. (See the Murray/Erdley blog at http://differance-engine.net/krew/?p=110 for more details.)
Dr McDonald enumerated three types of electronic personal health records (EPR): stand alones, in which the consumer enters the data; linked, in which the data can be both patient entered and drawn from other sources; and patient portals, which are controlled by institutions and provide consumers the ability to view designated existing information such as test results. This latter type may also provide services such as the ability to make appointments, renew prescriptions, and send e-mail. Today, few of these allow data from other sources to be entered. There are many issues to be solved before an EPR that allows data from different sources can be realized, two are standardization of coding and an "open consumer ID."
Saturday morning featured Judy Ozbolt, PhD, RN, FAAN, FACMI, FAIMBE, who gave an overview of the history of nursing informatics starting with Florence Nightingale, who was the first proponent of evidence-based practice. Accomplishments of Harriet Werley, whose work with computers started at Walter Reed when she worked with IBM to identify how to use computers in healthcare, also include convincing the ANA as early as 1962 that nursing data could be used to improve patient care and being the driving force behind the Nursing Minimum Data Set. Virginia Saba, another nursing informatics pioneer whose work started in the 1970s when she was program officer at the public health service division of nursing, is best associated with the Clinical Care Classification (formerly the Home Health Care Classification). As the chair of the IMIA NI-SIG, Dr Saba also coordinated the development of the ISO Reference Terminology Model for nursing diagnoses and action, which was released in 2003. In the 1970s, other early nursing informatics specialists, Margo Cook and Wanda McDowell, who came up with standardized computerized care plans when charged with putting nursing on the computer, pioneered the Technicon System at El Camino Hospital. Other notable events in the 1970s were the development of the Omaha System, pioneered by Karen Martin and Deanne Simmons and others at the Omaha Visiting Nursing Association; the introduction of the nursing perspective to informatics research at Massachusetts General Hospital; the birth of NANDA; and the publication of two articles in Nursing Research. Informatics courses in schools of nursing were introduced in the 1980s, and the first graduate program in nursing informatics was started at the University of Maryland in 1988. In the 1990s, the first PhD in nursing informatics was earned by Nancy Staggers.
Professional associations in informatics appeared in 1977 with the Symposium on Computer Applications in Medical Care (SCAMC), which later became the American Medical Informatics Association (AMIA). (For information about the history of nursing informatics and AMIA, see http://www.amia.org/history/presentations/PresentationSlides1.pdf.) The 1990s saw increased development in nursing clinical terminologies and the first nursing terminology summit (1999). As interest in electronic health records has grown, this decade has seen further development of languages and data standards and nurses participating in these efforts at the national and international level. The future will see technologies being used to change care processes and, it is hoped, the wisdom to transform nursing practice and healthcare.
This presentation concluded with Mary Etta Mills, ScD, RN, FAAN, a founding member of the University of Maryland's graduate nursing informatics program, who presented an overview of the dissertations from the University's Nursing Informatics Doctoral Program.
A report on Project Health Design: Rethinking the Power and Potential of Personal Health Records sponsored by the Robert Wood Johnson Foundation with additional support from the California Health Care Foundation was the focus of another presentation. This project, which started in 2006, consists of nine US teams selected from 170 proposals that are creating application-driven projects using a new set of tools to engage the end users.
Dr Massoudi spoke on one of the projects entitled "ActivHealth: A PHR System for At-Risk Sedentary Adults." This program is designed to encourage sedentary adults to become more physically active through tools that support behavior changes by using individualized activity interventions. By talking with consumers to learn what they wanted, they discovered that consumers want an easy to use tool, advice on activity, and goals that can be integrated into their lifestyles. What consumers do not find helpful is advice such as "Get more exercise." Some of the mediators they developed were goal setting by pulling data from a biomonitor and using the individual's calendar to schedule time for exercise, self-monitoring by providing feedback on activity, providing supportive instant messages, and reminding people to reward themselves when they reach a given point toward their goal.
Another project, "Living Profiles: Personal Health Records for Teenagers," was presented by Dr Lisa Nugent from the Art Center College of Design. This project is aimed at teenagers with chronic diseases who face challenges when they move from pediatric to adult healthcare. The developers found disconnects between how teens and healthcare providers measure quality of life. Teens define quality of life through engagement in social networks. They define and chart their future without reference to their diseases, hospitalizations, and the medications that they must take. When asked if they have questions, they will say "no," but if asked if there is something they would like to know more about, they open up. What is meaningful to teens is often meaningful to caregivers, it is just that they use different language to express it. The personal health record they designed uses teen language, such as pictures, and music to create an emotional connection.
Dr Ken Goodman from the University of Miami discussed the ethical, legal, and social issues with EPRs. He pointed out that there is no legal precedent for this type of healthcare record nor does HIPAA anticipate them; thus, there is a need for HIPAA 2.0 that takes account of these new changes. Currently, the much promoted EPR from Google and Microsoft offers no legal privacy protection. Dr Goodman stated that patients must take some responsibility for the privacy of their own records. Characteristics of EPRs such as decision support raise questions such as "When do reminders and alerts tip over to become advice?" Dr Goodman stated that ethics needs to be built into EPRs from the beginning and that, ideally, an EPR will create an environment in which consumers will create something of value for themselves.
The closing distinguished lecturer, Patti Brennan, RN, PhD, who holds an endowed chair at the University of Wisconsin, Madison, titled her presentation "Building Connections for Patient-Centered Records: Bridging the Last 10 Feet!" During her presentation, she showed a video about a device under construction for managing diabetes (available at http://www.youtube.com/watch?v=VQe1tssyGkU). Dr Brennan stated emphatically that a patient-centric healthcare system is impossible without the engagement of nurses and the nursing perspective.
The idea of EPRs began with the thought of providing consumers a view into their medical record. The new view is that the data alone are not sufficient, there must be services and tools for use and the ability of patients to audit and look at their record and the data being looked at. The promise of an EPR is "all my data everywhere and anywhere," with tools to make them meaningful to both consumers and healthcare providers. Many different entities are trying to get into the EPR business including medicare (My Medicare, http://mymedicare.gov/), insurance companies, private companies such as WebMD (http://www.webmd.com/phr), American Health Information Management Association (http://www.webmd.com/phr), My Medical Records (http://www.mymedicalrecords.com/login.jsp), and, of course, Microsoft's Health Vault (http://www.healthvault.com/) and Google Health (http://www.google.com/health). Health Vault is positioned more as a data and device integrator than as an EPR, although it appears to many as an EPR. Google Health uses the Continuity of Care Record (CCR) data format, which allows for data input and export with other institutions. Currently, the Kaiser Permanente HMO is piloting the use of Health Vault for their patients (will be complete in November 2008). If successful, Kaiser's patients will be offered this service. The Cleveland Clinic is testing a partnership with Google Health.
To be a true EPR, Dr Brennan believes that it must be "actionable," that is, patients need to know what actions they need to take, for example, if they forget a medication, what should they do. The information in the EPR needs to be understood by both the consumer and the clinician. This requires tools that allow engagement with patients, providers, payers, employers, and public health authorities. The focus in an EPR needs to be on what the consumer and clinician do with the data, not the data themselves. To provide the last 10 feet of connection, creators must remember that sometimes, the receiver is in motion, at home, at work, shopping, or with friends.
Peter Murray and Scott Erdley again provided a running account of the conference in their blogs. It can be seen at http://www.hi-blogs.info/.
Linda Q. Thede, PhD, RN
Editor, CIN Plus