Embracing an Integrated Personal Health Record for Continuity of Care Grace Gao, MS, MA, RN1, Bonnie L. Westra, PhD, RN, FAAN2 1 DNP Student, School of Nursing, University of Minnesota, 308 Harvard St SE, Minneapolis, MN 55455, USA 2 Associate Professor, School of Nursing, University of Minnesota, Minneapolis, MN, USA Contributions: Grace Gao – (a) Wrote the text of the manuscript itself; (b) conducted the data collected for any analysis; (c) conducted the actual data analysis; (d) reviewed the literature; and evaluated the results and the formation of the conclusion. Bonnie L. Westra, advised the student on the development of the study provided edits. Abstract There is a lack of information exchange for patients utilizing complementary and alternative therapies such as Traditional Chinese Medicine (TCM) combined with conventional western medicine. Siloed health information can lead to potential problems for safe, quality care and optimal health. The Continuity of Care Document (CCD) is intended to be a subset of health data to exchange between providers and foundational for personal health records (PHR). It is unknown, however, about the relevance of CCD to represent TCM data for information exchange across different health systems. Four clinical data elements and related standards in CCD were evaluated for relevance to TCM providers and adequacy to represent TCM data. Project results indicate that even though standardized TCMspecific terminology and coding are lacking, the CCD data elements and standards are relevant to TCM providers. Recommendations are made for an integrated PHR containing both conventional western medicine and TCM following the CCD standard. Introduction In the current healthcare environment, communication across health care providers is essential for safe, quality care and optimal health. Lack of information exchange across health systems with different methods of delivering care potentially jeopardizes a patient’s ability to profit from treatments and in fact, potentially can lead to harm1. The absence of information exchange across different health systems is particularly problematic for patients who pursue complementary and alternative medicine (CAM) therapies such as Traditional Chinese Medicine (TCM) in combination with conventional medical treatment under a biomedical framework. Health information documented by a primary care provider under a conventional biomedical model is minimally represented in the current information system in a TCM setting while health information collected in a TCM setting is typically missed in the information system of a primary health provider1, 2. As a result, the health information in these two different health systems remains isolated and separate. While the US health policy is for all health providers to use interoperable electronic health records (EHR) by 2015 that provide consumers with access to their health information, CAM providers are largely ignored. Consumers do not have access to information about both types of care integrated into a single source so that they can effectively manage their own health and be the conduit of information across all health care providers. The purpose of this project is to fill a gap in health information exchange by evaluating the adequacy of one standard, the Continuity of Care Document (CCD) to represent TCM data for information exchange in the future. Background TCM provides a CAM service delivered through a health system that departs from the mainstream biomedical approach and offers an alternative or complementary solution to treating health problems as well as preventative health solutions for self-health promotion. In either case, minimal data from primary care visits are available to TCM clinicians and information documented at a TCM clinic is usually not available for primary care providers. A majority of physicians are not informed of the use of CAM therapies from their patients and patients who have sought CAM therapies have reluctantly shared their experiences with their primary healthcare providers3, 4. The lack of communication and information exchange has created various clinical situations that affect patient care safety and quality1. A patient’s previous health history, current health conditions, and medications greatly impact current TCM treatment plans and options. Additionally, a patient’s efforts in self-care maintenance and promotion through a CAM therapy are not incorporated into their overall care under primary care providers. As a result, an opportunity for care coordination and continuity of care is missed with the lack of information exchange, potentially jeopardizing the quality and safety of care in addition to jeopardizing the patients’ ability for self-care management
which is to integrate the benefits of both care delivery systems. Self-care promotion is closely associated with behavioral changes that have been identified as important in healthcare reform. Behavioral related issues occupy one of the three “wastebaskets” associated with health system inefficiencies that drive up healthcare costs, “where individual behaviors are shown to lead to health problems, and have potential opportunities for earlier, non-medical interventions”5 (p.5). Integrating health information from biomedical and CAM therapies can enable individuals to more appropriately manage their health. CAM therapies have become not only an alternative or complementary solution to health problems but also a well sought solution for prevention and health promotion. In the U.S, approximately 4 in 10 Americans will use a CAM therapy during the year for their health promotion and treatment6 and consumers spend nearly $34 billion on CAM therapies each year7, which makes it one of the rapidly growing health care businesses. Subsequently, many consumers seek CAM therapies in combination with their traditional medical treatment in separate health systems. Without integrated data and information collected in both information systems, patients’ efforts in self-health promotion cannot be fully achieved. In addition, patient care would be delivered in fragmentation without continuity of care. A solution is needed to fill the gap between these two systems so that individual care delivered to this population can incorporate coordination and integration of healthcare services along a continuum of patient-oriented care with full quality assurance and information coordination of health services. Even though a primary care system and a TCM system adopt different approaches in their patient care practice, they share a common goal where an individual patient becomes the ultimate focus of care as well as the source that collects and gathers his/her health information. “A fragmented system of storing and retrieving essential patient data impedes optimal care”8 (p.121). An integrated approach and information sharing becomes an inevitable requirement to be part of the solution. As information technology continues to expand in healthcare and in an individual’s daily living, one tool for self-health management is for a patient to access his/her health information integrated into a personal health record (PHR). Health care consumers are increasingly using PHRs, but they may lack specific information related to TCM data. PHRs can serve as a bridge for capturing data across health systems and providers, making it available to assure full information integration and management of their health. Many PHRs are closely tied to EHRs. “EHRs will improve caregivers’ decisions and patients’ outcomes”9 (p.501). One national standard related to meaningful use of EHRs is represented in the Continuity of Care Document (CCD) developed by Health Level Seven (HL7) and further specified by Healthcare Information Technology Standards Panel (HITSP)10. One of the meaningful use of EHR requirements is for healthcare providers to share an electronic copy of patient health information summary with the patient upon request11 and thus a PHR can become one solution for patients to receive this information. TCM providers along with other CAM providers share common interests with primary care providers in accessing appropriate health information for safe and quality care through this information exchange channel. A PHR can serve to bridge the gap in information exchange between traditional and alternative care practitioners. The CCD, specifically named as the HITSP Summary Document Using HL7 Continuity of Care Document (CCD) Component, “describes the document content summarizing a consumer's medical status for the purpose of information exchange” between EHR or PHR systems10 (p.11). The content required for information exchange constitutes both administrative and clinical information, subsets of data in an EHR or PHR developed to facilitate information exchange. Further specifications define the content in order to facilitate interoperability between participating systems such as a PHR system or an EHR system as identified and permitted. Therefore, as an approach, the CCD can be adopted as a golden standard to develop an integrated solution to generate an electronic patient health information summary in both a primary care setting and a TCM setting that can interface with a PHR. Since the CCD covers a wide range of administrative and clinical data descriptions and specifications, in this paper, four pertinent clinical data elements in the CCD were evaluated for relevance for capturing related TCM care information and to identify if the CCD and related standards for data elements are adequate to represent TCM data in a TCM clinical setting. Conceptual Framework An information exchange framework based on a patient-centered construct was used in which an individual patient is the center of care that collects and stores different types of health information based on the diverse individualized needs. In addition, a web-based user-driven solution to enhance the information collection and exchange centering around an individual patient can be constructed in a PHR. The PHR, in turn, also functions within the context of
EHRs across different health systems. A diagram that depicts this framework and process is illustrated in Figure 1 “Patient-Centered Health Information Exchange.” This diagram displays a proposed conceptual framework of dynamic data exchange to promote continuity of care and empower patients. This conceptual framework fulfills an agreement among different health information discourses and constructs various elements around the patient and his/her health information. Method A TCM survey was developed to evaluate the relevance of four clinical data elements and specifications in the CCD in a TCM clinical setting. The survey was used as a structured interview guide. The four data elements specified in the CCD, included “Condition,” “Medication – Prescription/Non-prescription,” “Encounter,” and “Procedure.” It was determined by the University of Minnesota IRB office that this study did not require an IRB approval. Fifty-one items are listed in the survey: Condition (n=5), Medications (n=40), Encounter (n=5), and Procedure (n=1). The items included for each of the CCD data element categories can be found at http://wiki.hitsp.org/docs/C32/C323.html. Participants were asked to rate each item by assigning a number: 1 = relevant, currently collected; 2 = relevant, not currently collected; and 3 = not relevant, not collected. Both 1 and 2 are considered relevant to TCM care while 3 is deemed irrelevant. In addition to assigning a rating to each item, survey participants were also offered a chance to make specific comments related to each item in particular and each category of the four data elements in general. Data were collected either in person or by phone. Both quantitative and qualitative analyses were used to summarize the findings. A convenience sample of four of six TCM providers from three different institutions in one urban area responded to the personal invitation or invitation provided either by phone or email and completed the survey. Results All four participants were female, with two participants between 41 and 60 years of age and two were over 60. All were college educated and had a minimum of 10 years of experience in practice. Three of the four had 20 – 30 years of experience. Their specialties included TCM Doctor (n=2), TCM Acupuncturist and Herbalist (n=1), TCM Acupuncturist (n=1). The relevance of the four CCD data elements are shown in Figure 2. All five items in the CCD data element category “Condition” were assigned “1” or “2” by all TCM practitioners indicating they were 100% relevant for TCM practice. A common theme was identified through the comments for “Conditions” that suggests challenges to use of terminology and coding systems based on conventional medical diagnoses and insurance billing codes to capture TCM specific information for specific conditions. Participants identified the lack of TCM-specific standardized terminology and coding systems to represent TCM specific terms for two related items “Problem Type” and “Problem Name.” The challenge is that one medical diagnosis based on conventional western medicine can be represented by many different TCM patterns of diagnoses, therefore, a term and code to represent a medical diagnosis or problem under a primary care provider may not be relevant or sufficient to capture a TCM specific diagnosis or problem. For the forty items listed in the CCD data element of “Medication,” the average across all items was 81% relevancy. “Prescription Number” was one consistent item rated by all participants as irrelevant to the TCM setting. Other items rated as irrelevant were “Order Number,” “Fill Number,” “Fill Status,” “Coded Product Generic Name,” “Coded Brand Name,” “Free Text Generic Product Name,” and “Free Text Brand Name” by two participants. The rest of the items rated by one participant as irrelevant were “Drug Manufacturer,” “Product Concentration,” “Type of Medication,” “Status of Medication,” “Indication,” “Dose Indicator,” “Fills,” “Order Expiration Date/Time,” and “Fulfillment Instructions.” Three undecided items identified by one participant was rated as irrelevant and were
“Indicate Medication Stopped,” “Vehicle,” and “Fulfillment History.” Similar comments were also made related to the lack of TCM-specific standardized terminology and coding systems to represent associated information. Eighty-five percent relevancy was reported for the five items in the data category of “Encounter.” Three out of the five items were all rated relevant to TCM care. Only two items “Encounter ID” and “Encounter Type” were rated as irrelevant by one participant. Participants indicated that TCM specific terminology was used to capture the description and documentation of a clinical encounter with similar comments to the lack of TCM-specific standardized terminology and coding systems to describe this process. All four participants rated the one item “Text” in the category of “Procedure” as completely relevant. Participants indicated that the text for “Procedure” could be used to describe a TCM procedure. One participant indicated that her clinic documented TCM procedure text within the framework of western medicine’s SOAP notes. Another finding was related to the ratings of 1 and 2. Even though both ratings suggested that the related item under investigation was relevant to TCM practice, the difference was that rating 1 indicated current collection of such information while rating 2 suggested the item as relevant but not currently collected in documentation. The different answers from participants regarding these two ratings demonstrated that the information systems were custom-made to meet individual institution’s needs, and thus it creates a siloed situation and may hinder information interoperability and exchange across providers. Discussion These results suggest that sufficient data representation can be achieved by adopting the related CCD data elements within a TCM clinical context. In a TCM clinical setting, International Classification of Diseases (ICD)-9 codes are used for purposes of clinical billing. However, they are not adequate for representing practice. For example, for the same ICD-9 diagnosis, a TCM diagnosis can vary for each individual case. This difference in diagnosis in TCM requires different planning options and treatment approaches that should be delineated in the current information system. Patients receiving TCM therapies need accurate TCM diagnoses and treatments for sharing with their traditional western practitioners and for self-care management. Development of this knowledge and understanding is essential in order to provide safe and effective health care to patients who use combination therapies12. Specific TCM descriptions and coding schemes are not yet adequately developed to represent TCM specific data and information associated with “Condition.” Terminology referenced in the CCD such as SNOMED CT includes some terms related to TCM practice, but further investigation is needed to determine the adequacy of these terms to represent TCM conditions. Even though data elements, standards, and specifications described in the CCD are relevant to adoption and generation into the TCM clinical setting, the CCD does not include terminology or coding schemes to fully embody this practice. As a result, standards for terminology and coding systems need to be explored and developed that encompass TCM services. TCM herbs and supplements can be prescribed by appropriately trained providers, and they are available to the public without prescription and fall into non-prescription category. Even though “Medication” related items are sufficient to capture the data elements related to TCM herbs and supplements, standardized terminology and vocabulary are still lacking to express the related knowledge. Increasing evidence from research suggests that some herbs and combinations of herbs used in TCM can create pharmacological effects and they can create herb-drug interactions, similar to drug-drug interactions in terms of their effects on absorption, distribution, metabolism and excretion properties13. So improvements in the knowledge sources and information in the information system will help both primary care providers and TCM practitioners develop holistic approaches for the safe combination of healthcare systems in a continued patient-centered healing process. “Encounter” related items are also reported as relevant to TCM data description for a clinical encounter in this setting. For the item “Encounter Type,” standardized terminology and vocabulary are also needed to fully describe a clinical encounter in a TCM setting. The “Procedure” item as a free text is also relevant to TCM treatment description. However, the CCD recognizes the limitation of related vocabularies allowed and the complicated issues involved to promote interoperability related to this data element9. This recognition calls for necessary considerations to include the development and collection in standards and terminology related to TCM specific procedures, and in an even more extensive fashion, TCM-specific conditions and treatment regimes. Custom-made information systems are employed to meet individual institution’s needs and can complicate information interoperability if not following standards and standardized terminology. The findings in this project suggest the relevance of relevancy and sufficiency of adopting the CCD standards specified for these data elements,
the CCD can be used to build information structure in a TCM setting to generate a patient health information summary. This project is limited in scope. Only four practitioners participated in the survey through a convenience sample. This survey only evaluated four clinical data elements, and so a further study may be warranted to include a broader range of data elements for evaluation. Recommendation In conclusion, the four data elements described and specified in the CCD are relevant to related TCM care data description in a TCM clinical setting. However, TCM-specific standardized terminology, vocabulary, and coding systems need to be cultivated to capture full knowledge representation of clinical health data and information in this setting in a patient health information summary. The groundwork should be established for data exchange and interoperability in EHRs and PHRs that encompasses CAM therapies such as TCM therapies. Such groundwork can be initiated through the integration of evolving terminology models that embrace CAM therapies and map such domain information to comprehensive health care information models. The CCD can be adopted as a standard to incorporate such works into the information systems in both a primary care setting and a TCM setting that interface with an integrated PHR based on the CCD standard. This way, a patient can have an integrated source to access his/her health information and utilize holistic and combined approaches of health management and promotion. References 1.
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Lawenda B. A new paradigm is emerging in medicine: integrative medicine. OM Summer 09. Nov 13, 2009. http://www.pacificcollege.edu/acupuncture-massage-publications/A-New-Paradigm-Is-Emerging-In-MedicineIntegrative-Medicine.html. (Accessed August 24, 2011). Chao MT, Wade C, Kronenberg F. Disclosure of complementary and alternative medicine to conventional medical providers: variation by race/ethnicity and type of CAM. Journal of the National Medical Association. 2008 Nov;100(11),1341-9. Liu C, Yang Y, Gange SJ, et al. Disclosure of complementary and alternative medicine use to health care providers among HIV-infected women. AIDS Patient Care & STDs. 2009 Nov;23(11),965-71. Eisenberg DM, Davis RB, Ettner SL, et al. Trends in alternative medicine use in the United States, 1990-1997: results of a follow-up national survey. JAMA: The Journal of the American Medical Association. 1998;280(18), 1569-1575. PricewaterhouseCoopers’ Health Research Institute. The price of excess: identifying waste in healthcare spending. http://pwchealth.com/cgi-local/hregister.cgi?link=reg/waste.pdf. (Accessed Dec 16, 2010). Barrett B. Alternative, complementary, and conventional medicine: is integration upon us? Journal of Alternative and Complementary Medicine. 2003;9(3),417-427. Kaiser Health News. More people rely on alternative medicine. Oct 27, 2009. http://www.kaiserhealthnews.org/ daily-reports/2009/october/27/alt-medicine.aspx?referrer=search. (Accessed Dec 16, 2010). Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. JAMIA. 2006;13(2),121-126. Blumenthal D, TavennerM. The "meaningful use" regulation for electronic health records. The New England Journal of Medicine. 2010;363(6),501-504. Healthcare Information Technology Standards Panel (HITSP). HITSP Summary Document Using HL7 Continuity of Care Document (CCD) Component. http://wiki.hitsp.org/docs/C32/C32-1.html. (Accessed Dec 16, 2010). Center for Medicare & Medicaid. Medicare and Medicaid Programs; Electronic Health Record Incentive Program; Final Rule. http://edocket.access.gpo.gov/2010/pdf/2010-17207.pdf. (Accessed Jan 10, 2011). Davidson P, Hancock K, Leung D, et al. Traditional Chinese Medicine and heart disease: what does western medicine and nursing science know about it? European Journal of Cardiovascular Nursing: Journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. 2003;2(3),171-181. Chan E, Tan M, Xin J, Sudarsanam S, Johnson DE. Interactions between traditional Chinese medicines and Western therapeutics. Current Opinion in Drug Discovery & Development. 2010;13(1),50-65.
which is to integrate the benefits of both care delivery systems. Self-care promotion is closely associated with behavioral changes that have been identified as important in healthcare reform. Behavioral related issues occupy one of the three “wastebaskets” associated with health system inefficiencies that drive up healthcare costs, “where individual behaviors are shown to lead to health problems, and have potential opportunities for earlier, non-medical interventions”5 (p.5). Integrating health information from biomedical and CAM therapies can enable individuals to more appropriately manage their health. CAM therapies have become not only an alternative or complementary solution to health problems but also a well sought solution for prevention and health promotion. In the U.S, approximately 4 in 10 Americans will use a CAM therapy during the year for their health promotion and treatment6 and consumers spend nearly $34 billion on CAM therapies each year7, which makes it one of the rapidly growing health care businesses. Subsequently, many consumers seek CAM therapies in combination with their traditional medical treatment in separate health systems. Without integrated data and information collected in both information systems, patients’ efforts in self-health promotion cannot be fully achieved. In addition, patient care would be delivered in fragmentation without continuity of care. A solution is needed to fill the gap between these two systems so that individual care delivered to this population can incorporate coordination and integration of healthcare services along a continuum of patient-oriented care with full quality assurance and information coordination of health services. Even though a primary care system and a TCM system adopt different approaches in their patient care practice, they share a common goal where an individual patient becomes the ultimate focus of care as well as the source that collects and gathers his/her health information. “A fragmented system of storing and retrieving essential patient data impedes optimal care”8 (p.121). An integrated approach and information sharing becomes an inevitable requirement to be part of the solution. As information technology continues to expand in healthcare and in an individual’s daily living, one tool for self-health management is for a patient to access his/her health information integrated into a personal health record (PHR). Health care consumers are increasingly using PHRs, but they may lack specific information related to TCM data. PHRs can serve as a bridge for capturing data across health systems and providers, making it available to assure full information integration and management of their health. Many PHRs are closely tied to EHRs. “EHRs will improve caregivers’ decisions and patients’ outcomes”9 (p.501). One national standard related to meaningful use of EHRs is represented in the Continuity of Care Document (CCD) developed by Health Level Seven (HL7) and further specified by Healthcare Information Technology Standards Panel (HITSP)10. One of the meaningful use of EHR requirements is for healthcare providers to share an electronic copy of patient health information summary with the patient upon request11 and thus a PHR can become one solution for patients to receive this information. TCM providers along with other CAM providers share common interests with primary care providers in accessing appropriate health information for safe and quality care through this information exchange channel. A PHR can serve to bridge the gap in information exchange between traditional and alternative care practitioners. The CCD, specifically named as the HITSP Summary Document Using HL7 Continuity of Care Document (CCD) Component, “describes the document content summarizing a consumer's medical status for the purpose of information exchange” between EHR or PHR systems10 (p.11). The content required for information exchange constitutes both administrative and clinical information, subsets of data in an EHR or PHR developed to facilitate information exchange. Further specifications define the content in order to facilitate interoperability between participating systems such as a PHR system or an EHR system as identified and permitted. Therefore, as an approach, the CCD can be adopted as a golden standard to develop an integrated solution to generate an electronic patient health information summary in both a primary care setting and a TCM setting that can interface with a PHR. Since the CCD covers a wide range of administrative and clinical data descriptions and specifications, in this paper, four pertinent clinical data elements in the CCD were evaluated for relevance for capturing related TCM care information and to identify if the CCD and related standards for data elements are adequate to represent TCM data in a TCM clinical setting. Conceptual Framework An information exchange framework based on a patient-centered construct was used in which an individual patient is the center of care that collects and stores different types of health information based on the diverse individualized needs. In addition, a web-based user-driven solution to enhance the information collection and exchange centering around an individual patient can be constructed in a PHR. The PHR, in turn, also functions within the context of
EHRs across different health systems. A diagram that depicts this framework and process is illustrated in Figure 1 “Patient-Centered Health Information Exchange.” This diagram displays a proposed conceptual framework of dynamic data exchange to promote continuity of care and empower patients. This conceptual framework fulfills an agreement among different health information discourses and constructs various elements around the patient and his/her health information. Method A TCM survey was developed to evaluate the relevance of four clinical data elements and specifications in the CCD in a TCM clinical setting. The survey was used as a structured interview guide. The four data elements specified in the CCD, included “Condition,” “Medication – Prescription/Non-prescription,” “Encounter,” and “Procedure.” It was determined by the University of Minnesota IRB office that this study did not require an IRB approval. Fifty-one items are listed in the survey: Condition (n=5), Medications (n=40), Encounter (n=5), and Procedure (n=1). The items included for each of the CCD data element categories can be found at http://wiki.hitsp.org/docs/C32/C323.html. Participants were asked to rate each item by assigning a number: 1 = relevant, currently collected; 2 = relevant, not currently collected; and 3 = not relevant, not collected. Both 1 and 2 are considered relevant to TCM care while 3 is deemed irrelevant. In addition to assigning a rating to each item, survey participants were also offered a chance to make specific comments related to each item in particular and each category of the four data elements in general. Data were collected either in person or by phone. Both quantitative and qualitative analyses were used to summarize the findings. A convenience sample of four of six TCM providers from three different institutions in one urban area responded to the personal invitation or invitation provided either by phone or email and completed the survey. Results All four participants were female, with two participants between 41 and 60 years of age and two were over 60. All were college educated and had a minimum of 10 years of experience in practice. Three of the four had 20 – 30 years of experience. Their specialties included TCM Doctor (n=2), TCM Acupuncturist and Herbalist (n=1), TCM Acupuncturist (n=1). The relevance of the four CCD data elements are shown in Figure 2. All five items in the CCD data element category “Condition” were assigned “1” or “2” by all TCM practitioners indicating they were 100% relevant for TCM practice. A common theme was identified through the comments for “Conditions” that suggests challenges to use of terminology and coding systems based on conventional medical diagnoses and insurance billing codes to capture TCM specific information for specific conditions. Participants identified the lack of TCM-specific standardized terminology and coding systems to represent TCM specific terms for two related items “Problem Type” and “Problem Name.” The challenge is that one medical diagnosis based on conventional western medicine can be represented by many different TCM patterns of diagnoses, therefore, a term and code to represent a medical diagnosis or problem under a primary care provider may not be relevant or sufficient to capture a TCM specific diagnosis or problem. For the forty items listed in the CCD data element of “Medication,” the average across all items was 81% relevancy. “Prescription Number” was one consistent item rated by all participants as irrelevant to the TCM setting. Other items rated as irrelevant were “Order Number,” “Fill Number,” “Fill Status,” “Coded Product Generic Name,” “Coded Brand Name,” “Free Text Generic Product Name,” and “Free Text Brand Name” by two participants. The rest of the items rated by one participant as irrelevant were “Drug Manufacturer,” “Product Concentration,” “Type of Medication,” “Status of Medication,” “Indication,” “Dose Indicator,” “Fills,” “Order Expiration Date/Time,” and “Fulfillment Instructions.” Three undecided items identified by one participant was rated as irrelevant and were
“Indicate Medication Stopped,” “Vehicle,” and “Fulfillment History.” Similar comments were also made related to the lack of TCM-specific standardized terminology and coding systems to represent associated information. Eighty-five percent relevancy was reported for the five items in the data category of “Encounter.” Three out of the five items were all rated relevant to TCM care. Only two items “Encounter ID” and “Encounter Type” were rated as irrelevant by one participant. Participants indicated that TCM specific terminology was used to capture the description and documentation of a clinical encounter with similar comments to the lack of TCM-specific standardized terminology and coding systems to describe this process. All four participants rated the one item “Text” in the category of “Procedure” as completely relevant. Participants indicated that the text for “Procedure” could be used to describe a TCM procedure. One participant indicated that her clinic documented TCM procedure text within the framework of western medicine’s SOAP notes. Another finding was related to the ratings of 1 and 2. Even though both ratings suggested that the related item under investigation was relevant to TCM practice, the difference was that rating 1 indicated current collection of such information while rating 2 suggested the item as relevant but not currently collected in documentation. The different answers from participants regarding these two ratings demonstrated that the information systems were custom-made to meet individual institution’s needs, and thus it creates a siloed situation and may hinder information interoperability and exchange across providers. Discussion These results suggest that sufficient data representation can be achieved by adopting the related CCD data elements within a TCM clinical context. In a TCM clinical setting, International Classification of Diseases (ICD)-9 codes are used for purposes of clinical billing. However, they are not adequate for representing practice. For example, for the same ICD-9 diagnosis, a TCM diagnosis can vary for each individual case. This difference in diagnosis in TCM requires different planning options and treatment approaches that should be delineated in the current information system. Patients receiving TCM therapies need accurate TCM diagnoses and treatments for sharing with their traditional western practitioners and for self-care management. Development of this knowledge and understanding is essential in order to provide safe and effective health care to patients who use combination therapies12. Specific TCM descriptions and coding schemes are not yet adequately developed to represent TCM specific data and information associated with “Condition.” Terminology referenced in the CCD such as SNOMED CT includes some terms related to TCM practice, but further investigation is needed to determine the adequacy of these terms to represent TCM conditions. Even though data elements, standards, and specifications described in the CCD are relevant to adoption and generation into the TCM clinical setting, the CCD does not include terminology or coding schemes to fully embody this practice. As a result, standards for terminology and coding systems need to be explored and developed that encompass TCM services. TCM herbs and supplements can be prescribed by appropriately trained providers, and they are available to the public without prescription and fall into non-prescription category. Even though “Medication” related items are sufficient to capture the data elements related to TCM herbs and supplements, standardized terminology and vocabulary are still lacking to express the related knowledge. Increasing evidence from research suggests that some herbs and combinations of herbs used in TCM can create pharmacological effects and they can create herb-drug interactions, similar to drug-drug interactions in terms of their effects on absorption, distribution, metabolism and excretion properties13. So improvements in the knowledge sources and information in the information system will help both primary care providers and TCM practitioners develop holistic approaches for the safe combination of healthcare systems in a continued patient-centered healing process. “Encounter” related items are also reported as relevant to TCM data description for a clinical encounter in this setting. For the item “Encounter Type,” standardized terminology and vocabulary are also needed to fully describe a clinical encounter in a TCM setting. The “Procedure” item as a free text is also relevant to TCM treatment description. However, the CCD recognizes the limitation of related vocabularies allowed and the complicated issues involved to promote interoperability related to this data element9. This recognition calls for necessary considerations to include the development and collection in standards and terminology related to TCM specific procedures, and in an even more extensive fashion, TCM-specific conditions and treatment regimes. Custom-made information systems are employed to meet individual institution’s needs and can complicate information interoperability if not following standards and standardized terminology. The findings in this project suggest the relevance of relevancy and sufficiency of adopting the CCD standards specified for these data elements,
the CCD can be used to build information structure in a TCM setting to generate a patient health information summary. This project is limited in scope. Only four practitioners participated in the survey through a convenience sample. This survey only evaluated four clinical data elements, and so a further study may be warranted to include a broader range of data elements for evaluation. Recommendation In conclusion, the four data elements described and specified in the CCD are relevant to related TCM care data description in a TCM clinical setting. However, TCM-specific standardized terminology, vocabulary, and coding systems need to be cultivated to capture full knowledge representation of clinical health data and information in this setting in a patient health information summary. The groundwork should be established for data exchange and interoperability in EHRs and PHRs that encompasses CAM therapies such as TCM therapies. Such groundwork can be initiated through the integration of evolving terminology models that embrace CAM therapies and map such domain information to comprehensive health care information models. The CCD can be adopted as a standard to incorporate such works into the information systems in both a primary care setting and a TCM setting that interface with an integrated PHR based on the CCD standard. This way, a patient can have an integrated source to access his/her health information and utilize holistic and combined approaches of health management and promotion. References 1.
2.
3. 4.
5. 6. 7. 8. 9. 10.
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