a PHR: personal health record.
The GQ group of research questions concerns a broader classification and some challenges concerning PHRs. GQ1 refers to the question of classifying and defining the taxonomy for PHRs. This research question focuses on the interoperability capacity that a PHR can have. This question highlights integration issues of a PHR that is created and maintained by systems that are developed using heterogeneous technologies. GQ2 refers to the key challenges and issues in using PHRs. This is the main factor that will serve as a direct influence in the PHR survey. The purpose is to identify the types of issues that have been raised in the literature in the last decade. The research focuses on identifying the main problems affecting the spread of PHR adoption by patients and health care providers. For this question, we are able to reason with regard to the issues and factors that consequently influence PHR adoption.
With the general research questions, we have also explored some derived specific research questions (SQ group) to improve the study filtering process. These questions have been proposed to pinpoint questions surrounding the adoption of the PHR. SQ1 seeks to identify the data types that a PHR can contain. SQ2 investigates the types and profiles of users who interact with a PHR. SQ3 examines the types of standards that are used in PHR implementations. SQ4 seeks to show the interaction types that a patient has with a PHR. SQ5 concentrates on evaluating the techniques or methods used to input data into a PHR. SQ6 investigates the purposes of a PHR. Finally, SQ7 concentrates on the types and models of PHR architecture.
The next step was to find a complete set of studies related to the research questions. This process involved the designation of search keywords and the definition of search scope [ 34 ]. In the construction of search keywords phase, we defined keywords to obtain accurate search results. In their report, Kitchenham and Charters [ 31 ] suggest breaking down the research question into individual facets as research units, where their synonyms, acronyms, abbreviations, and alternative spellings are all included and combined by Boolean operators. In addition, Petticrew and Roberts [ 34 ] propose the PICOC (population, intervention, comparison, outcome, and context) criteria, which can be seen as guidelines to properly define such research units.
In focusing on defining the PHR technology, we defined broader PICOC criteria based on the general research questions. Our goal was to refine and answer the specific research questions, which are derived from the general research questions with a restricted focus. Therefore, under the PHR scenarios, we defined the PICOC criteria as follows.
The populations involve keywords, related terms, variants, or the same meaning for the technologies and standards on PHRs. Therefore, the following search string in Textbox 1 was defined for the selection.
(((“personal” or “patient” or “private”) and (“health”) and (“record” or “application” or “management” or “information”)) or (“patient” and (“access” or “portal”)) or (“PHR” or “PHA” or “PHM” or “PHI”))
We used the following terms to better filter studies in line with the purposes: health data, health services monitoring and reporting, patient monitoring devices, remote health monitoring, and mobile health care devices.
This case refers to the comparison of different architecture types and models of implementation of the PHR. In addition, we compared the different PHR types regarding coverage and localization.
The outcomes related to factors of importance to practitioners (eg, improved reliability) and, in particular, to the patient. With respect to PHRs, this might refer to reducing the cost of collecting data, improving health information quality, anticipating potential problems, and allowing the patients to interact with their health data.
In this regard, we analyzed the context of PHR information coverage in terms of content such as standardization, information grouping, and security and privacy in the relationships between patients and health care providers.
Hence, the final keyword set is displayed in Textbox 2 .
Keywords = PICOC = Population AND Intervention AND Comparison AND Outcome AND Context
In the definition of search scope phase, the source studies were obtained from selected electronic databases by searching using the constructed research keywords.
Once we found all the related articles, we proceeded to remove the studies that were not as relevant and kept only those that were the most representative. Therefore, we removed the studies that did not address PHR specifically. To apply the exclusion criteria, we used the terms of population and intervention criteria as follows:
The steps of the filtering process are as follows: (1) impurity removal, (2) filter by title and abstract, (3) removal of duplicates, and (4) filter by full text.
First, the impurities of the search results were removed. Some impurities, for example, the names of conferences correlated to the search keywords, were included in the search results because of the characteristics of the different electronic databases.
Second, we analyzed the title and abstract of the articles and excluded those that did not address PHR as a subject.
Third, all the remaining studies were grouped and the duplicates were removed because some studies were in more than one database.
Some studies remained that were not particularly related to this survey. We analyzed the full text to remove those that were not relevant.
Since it is important and essential to assess the quality of the selected studies, the quality criterion is intended to verify that the article is really a relevant study [ 31 ]. We evaluated the selected articles with regard to the purpose of research, contextualization, literature review, related work, methodology, the results obtained, and the conclusion in accordance with objectives and indication of future studies. For this purpose, the quality was evaluated according to Table 2 , where the questions to which the articles were submitted to validate that these studies met the quality criteria are listed.
Quality assessment criteria.
Identifier | Issue |
C1 | Does the article clearly show the purpose of the research? |
C2 | Does the article adequately describe the literature review, background, or context? |
C3 | Does the article present the related work with regard to the main contribution? |
C4 | Does the article have an architecture proposal or research methodology described? |
C5 | Does the article have research results? |
C6 | Does the article present a conclusion related to the research objectives? |
C7 | Does the article recommend future works, improvements, or further studies? |
We also developed an evaluation form for the selected articles in order to gather information about the studies and the sections where we found answers to general and specific research questions, which are presented in Table 3 . This table shows each item of the study related to the research question, allowing us to assess and extract details of the articles and understand how the studies have addressed the issues related to the proposed research questions. The aim was to direct the survey to specific points that would answer the research questions.
Review articles related to the research questions.
Section | Description | Research questions | |
| Title | Title of the scientific article | GQ1 , GQ2, SQ1 , SQ2, SQ7 |
Abstract | Summary of paper’s purpose, method, and results | GQ1, GQ2, SQ1, SQ2, SQ7 | |
Keywords | Words representing the text content | GQ1, GQ2, SQ1, SQ2, SQ7 | |
| Introduction | Introduction specifies the issue to be addressed | All questions |
Background | Section includes concepts and is related to the proposal | All questions | |
| Method | Presents and describes the scientific methodology | All questions |
| Results | Performs an evaluation according to the proposed methodology | All questions |
Discussion | Data that were quantified compared with the literature | GQ2, SQ2-SQ7 | |
Conclusion | Findings related to the objectives and hypotheses | GQ2, SQ2-SQ7 |
a GQ: general question.
b SQ: specific question.
In this section, we present the results obtained from the 48 fully assessed studies related to the research topic. We seek to answer each proposed research question in the following subsections through elaborative information synthesis. As a result, aside from answering the research questions, we have also proposed contributions in the PHR field from the study of related works, which are an updated taxonomy and an updated vision about main challenges and issues, as well as an updated survey about data types, standards, user types, profiles, and input techniques.
To cover as many related studies as possible, we selected 12 electronic databases as our search scope, which are listed in Multimedia Appendix 1 . These portals cover the most relevant journals and conferences within the computer science and health care field. In Multimedia Appendix 2 , we present the publishers or organization editors and the respective publications of the selected studies. Duplicated results produced from different databases were excluded by manual filtering in the study selection. To limit our search, we set the years to range from 2006 to 2016.
The selection process is summarized in Figure 2 , which shows the filtering process.
Systematic mapping study—article selection. SciELO: Scientific Electronic Library Online.
We found 5528 articles in the initial search before applying the exclusion criteria; of these, 3237 (58.55%) articles were identified as impurities. We applied the first exclusion criterion to the studies that remained after we withdrew these articles. Continuing the process, 1429/2291 (62.37%) articles were filtered through a title review, and 453/862 (52.5%) articles were filtered through abstract analysis. We grouped the studies that remained, and 205/409 (50.1%) articles were identified as duplicates and were removed. After this stage, exclusion criterion 2 was applied to the full text and only 97/204 (47.5%) remained.
When analyzing the 97 candidate articles in the list, we noticed that some of these studies were from the same author or research group and were similar in many respects. Some of these articles had been more recent or were even more complete versions but they remained essentially the same methods and techniques. For articles that were repeated, the most representative article was selected. Thus, 49 (50%, 49/97) articles were excluded at this stage. Finally, 48 articles were selected as the baseline for the study. An overview of all primary studies is presented in Table 4 with the identifier, reference, publication year, publisher, and type, which are sorted in ascending order by publication year.
List of articles.
Identifier | Study, year | Publisher | Type |
A01 | Bricon-Souf and Newman, 2006 [ ] | Elsevier | Journal |
A02 | Tang et al, 2006 [ ] | Oxford | Journal |
A03 | Frost and Massagli, 2008 [ ] | JMIR | Journal |
A04 | Kaelber et al, 2008 [ ] | Oxford | Journal |
A05 | Huda et al, 2009 [ ] | IEEE | Conference |
A06 | Kim et al, 2009 [ ] | JMIR | Journal |
A07 | Brennan et al, 2010 [ ] | Elsevier | Journal |
A08 | Castillo et al, 2010 [ ] | BioMed | Journal |
A09 | Horan et al, 2010 [ ] | JMIR | Journal |
A10 | Hudson and Cohen, 2010 [ ] | IEEE | Conference |
A11 | Jones et al, 2010 [ ] | MLA | Journal |
A12 | Nazi et al, 2010 [ ] | Springer | Journal |
A13 | Patel et al, 2010 [ ] | Elsevier | Journal |
A14 | Reti et al, 2010 [ ] | Oxford | Journal |
A15 | Wen et al, 2010 [ ] | JMIR | Journal |
A16 | Williams, 2010 [ ] | ACM | Conference |
A17 | Wynia and Dunn, 2010 [ ] | Wiley | Journal |
A18 | Archer et al, 2011 [ ] | Oxford | Journal |
A19 | Baird et al, 2011 [ ] | ACM | Conference |
A20 | Caligtan and Dykes, 2011 [ ] | Elsevier | Conference |
A21 | Lafky and Horan, 2011 [ ] | SAGE | Journal |
A22 | Liu et al, 2011 [ ] | ACM | Conference |
A23 | Siek et al, 2011 [ ] | Springer | Journal |
A24 | Zulman et al, 2011 [ ] | ACP | Journal |
A25 | Carrión Señor et al, 2012 [ ] | JMIR | Journal |
A26 | Emani et al, 2012 [ ] | JMIR | Journal |
A27 | Fuji et al, 2012 [ ] | Springer | Journal |
A28 | Kharrazi et al, 2012 [ ] | Elsevier | Journal |
A29 | Luo et al, 2012 [ ] | Springer | Journal |
A30 | Steele et al, 2012 [ ] | Wiley | Journal |
A31 | Sunyaev and Chornyi, 2012 [ ] | ACM | Journal |
A32 | Agarwal et al, 2013 [ ] | JMIR | Journal |
A33 | Li et al, 2013 [ ] | IEEE | Journal |
A34 | Nazi, 2013 [ ] | JMIR | Journal |
A35 | Woods et al, 2013 [ ] | JMIR | Journal |
A36 | Ancker et al, 2014 [ ] | Springer | Journal |
A37 | Bouri and Ravi, 2014 [ ] | JMIR | Journal |
A38 | Cahill et al, 2014 [ ] | Springer | Journal |
A39 | Chrischilles et al, 2014 [ ] | Oxford | Journal |
A40 | Ozok et al, 2014 [ ] | Elsevier | Journal |
A41 | Spil and Klein, 2014 [ ] | IEEE | Conference |
A42 | Wells et al, 2014 [ ] | Oxford | Journal |
A43 | Czaja et al, 2015 [ ] | SAGE | Journal |
A44 | Liu et al, 2015 [ ] | Elsevier | Journal |
A45 | Price et al, 2015 [ ] | BioMed | Journal |
A46 | Spil and Klein, 2015 [ ] | Elsevier | Journal |
A47 | Sujansky and Kunz, 2015 [ ] | Springer | Journal |
A48 | Ford et al, 2016 [ ] | JMIR | Journal |
a Oxford: Oxford University Press.
b JMIR: JMIR Publications.
c IEEE: Institute of Electrical and Electronics Engineers.
d BioMed: BioMed Central.
e MLA: Medical Library Association.
f ACM: Association for Computing Machinery.
g ACP: American College of Physicians.
In Figure 3 , we present the evolution of the selected publications over the years, ranging from 2006 to 2016. The studies were analyzed according to the main objectives, as seen in the figure legend, where the articles were divided into the groups “Structures,” “Architectures,” and “Functions.” Above each year, the number of articles published in that year is shown. Each item label includes the publisher of the work, and the journal and conference articles are distinguished by the box format.
Publication chronology. The numbers above years indicate the number of articles published. Oxford: Oxford University Press; JMIR: JMIR Publications; IEEE: Institute of Electrical and Electronics Engineers; BioMed: BioMed Central; MLA: Medical Library Association; ACM: Association for Computing Machinery; ACP: American College of Physicians.
In Figure 4 , we present the quality criteria score of the articles based on the quality assessment criteria proposed in Table 2 .
Quality assessment of the articles.
The quality criteria score each article obtained is shown on the vertical axis and the studies themselves on the horizontal axis, from 1 to 48. Upon analysis, most articles met all the criteria for evaluation, responding positively to at least 6 out of 7 quality assessment criteria. For instance, several articles do not comment on or cite possible future studies in general because they are conclusive articles, with a conclusion on its assessment.
Finally, to address the general research questions , we have identified the following.
We identified studies that investigated a number of current issues that were addressed in the PHR field. Therefore, we managed to build the proposed taxonomy to gather and organize the various possibilities for PHRs. By analyzing the selected articles and seeking to answer this general research question, we propose a taxonomy for PHR based on important characteristics of the models, and we believe that this taxonomy could help to classify, compare, and evaluate different PHR types. Moreover, this classification can provide an overview of possible alternatives in terms of aims, content, and architectures. The proposed taxonomy for the PHR classification is summarized in Table 5 , which is broadly divided into three groups: (1) Structures, (2) Functions, and (3) Architectures. Beside each item in Table 5 is a brief description of each classification. The specific research questions (SQ1 to SQ7) are included in the taxonomy, which was developed through analysis of the selected articles.
Personal health record taxonomy.
Group and item | Description | |
Main data types and standards used in health records | ||
| Data types | Data types found in PHRs (see subsection SQ1 ) |
Standards | Standards to which PHRs can adhere (see subsection SQ2) | |
Depicts the main goals and features present in the PHRs | ||
| Users profiles | User types and profiles that interact (see subsection SQ3) |
Interaction | Patient’s interaction types with a PHR (see subsection SQ4) | |
Data source | Techniques for input of information (see subsection SQ5) | |
Goals | Represents the aim of the PHR (see subsection SQ6) | |
Architecture types and scopes (see subsection SQ7) | ||
| Models | Describes the main architecture models |
Coverage | Has a physical location division for data |
a PHR: personal health record
b SQ: specific question
To answer this question, we listed and identified challenges, open questions, aspects, issues, and common concerns in the adoption of PHR among the analyzed studies. These aspects were collected and are presented in Table 6 . As seen, the content is split to group some of the common characteristics of challenges and concerns (GCC, group of challenges and concerns) related to collaboration and communication (GCC1), privacy, security, and trust (GCC2), infrastructure (GCC3), and integration (GCC4). The subject matter that is most commonly cited is separated by item, with the identifiers ranging from CC01 to CC15.
Personal health record challenges and concerns.
Group and identifier | Challenge and concern | Reference articles | |
: collaboration and communication | |||
| CC01 | Context-aware computing | A01, A41 |
CC02 | Wearable computing, IoT | A01, A28 | |
CC03 | AI applied to health | A01, A10, A16 | |
CC04 | Personalization, usability, familiarity, comfort | A02, A07, A19, A22, A29, A40, A42, A45 | |
CC05 | Manage medications | A23, A29 | |
CC06 | Patient-generated data | A22, A42, A44, A45, A47 | |
| CC07 | Confidentiality and integrity | A07, A08, A19, A29, A42, A45, A46 |
CC08 | Data repository ownership | A13, A16, A19, A45, A47 | |
CC09 | Authorization and access control technologies | A02, A07, A11, A16, A21, A22, A31, A40, A42 | |
CC10 | Secure transport protocol | A16, A22, A42, A47 | |
| CC11 | Portability—devices, equipment, hardware | A11, A18, A21, A23, A24, A28, A30, A42, A43, A44 |
CC12 | Efficiency and scalability | A01, A40, A41, A44, A45, A46 | |
| CC13 | Patterns in collecting medical data | A13, A17, A42, A47 |
CC14 | Terminology | A22, A29 | |
CC15 | Interoperability | A13, A16, A21 |
a GCC: group of challenges and concerns.
b CC: challenge and concern.
c IoT: Internet of Things.
d AI: artificial intelligence.
In GCC1 group, there are challenges and issues related to collaboration and communication, ranging from data types to be stored and made available in the PHR to policy barriers to limit the provided information type. Some articles mention the PHR data that are available according to the context awareness, such as CC01, and some articles discuss wearable computing and IoT, such as CC02. Other articles examine artificial intelligence that is applied to the health sector in CC03. The customization, usability, familiarity, and comfort when using the PHR is the subject matter of several articles in CC04, and the management of medications contained in the PHR is reviewed in CC05. The GCC2 group presents issues related to privacy, security, and reliability that are presented in PHRs: CC07 addresses confidentiality and integrity issues. CC08 refers to data repositories and their owners. CC09 examines access control technologies. CC10 includes a discussion on data transport protocols. The GCC3 group treats issues related to the infrastructure of PHRs, in which CC11 discusses the portability of devices and equipment used with a PHR. In CC12, issues on the efficient construction of computer systems and the scalability of the infrastructure used to support PHR solutions are discussed. Finally, in the GCC4 group, concerns about integration are examined, such as in CC13, which concerns patterns in collecting medical data. CC14 presents concerns about the terminology used to collect and store PHRs. Additionally, CC15 addresses issues about interoperability.
Regarding the specific research questions , we have identified the following:
To answer this research question, we analyzed all selected studies that involved research of the data types used in PHRs, which are summarized in Table 7 . Through the analysis of proposals and references in selected articles, we were able to obtain an updated set of data types related to PHRs. The data types ranged from information cited in many studies, such as those on allergies, immunizations, and medications, to types that are not frequently mentioned, such as genetic information and home monitoring data.
Personal health record data types.
Type | Description | Reference articles |
Allergies | Allergies and adverse reactions | A02, A12, A16, A18, A20, A25, A28, A30, A35, A39, A40, A41, A46 |
Demographic | Patient statistics and clinical data | A03, A20, A35, A39, A40, A43 |
Documents | Attached files (photos, scanned documents) | A07, A20, A28 |
Evolution | Progress and clinic notes, care plan | A07, A14, A18, A34 |
Family history | Family medical history | A02, A12, A16, A18, A20, A25, A28, A37 |
General | Patient registration information, emergency contact | A03, A12, A16, A18, A28 |
Genetic | Genetic information | A16, A25 |
Home monitor | Home-monitored data | A02, A18, A25 |
Immunizations | Immunization records (vaccine), tracking immunizations | A02, A09, A12, A16, A18, A19, A20, A25, A28, A30, A32, A37 |
Insurance | Insurance plan information, coding for billing | A16, A18, A28 |
Laboratory results | Laboratory and imaging test results (laboratory tests) | A02, A12, A14, A16, A18, A19, A20, A25, A28, A32, A35, A43 |
Major illnesses | List of major diseases | A03, A02, A12, A18, A25 |
Medications | Medication list prescribed, past medicines taken | A02, A07, A12, A16, A18, A20, A25, A28, A35, A39, A41 |
Prescriptions | Medical prescription refills (renewing) | A04, A09, A12, A15, A17, A43, A46 |
Prevention | Preventive health recommendations | A12, A18, A32, A40, A46 |
Providers | Previous health care provider list | A02, A18, A28, A30, A37 |
Scheduling | Appointments, past procedures, hospitalizations | A02, A12, A16, A18, A20, A25, A28, A35, A37 |
Social history | Social history, lifestyle (health habits) | A02, A12, A18, A25, A40 |
Summaries | Admissions, permanencies, and discharges | A39, A35, A43 |
Vital signs | Status of bodily functions | A16, A30, A35, A37, A40 |
Some providers use proprietary formats to organize their health records that are used only by internal applications, each of which has a different format [ 7 , 65 ]. Thus, to answer this question, we focused on open standards, which are summarized in Table 8 and present a vast number of data organizational patterns for health records. Table 8 lists the referenced standards (group of standards, GS) according to their goals: nomenclature and terminology (GS1), privacy (GS2), structural and semantic (GS3), and templates and technology platforms (GS4). In group GS1, standards regarding nomenclature and terminology were grouped. Group GS2 contains only one standard that addresses privacy. In the GS3 group, several structural and semantic standards are presented. Finally, the GS4 group is related to templates and technology platform standards. We were able to identify some standards from the research on integrations and related projects, such as openEHR [ 67 ], which is integrated with the DICOM (Digital Imaging and Communications in Medicine) standard and others.
Main personal health record–related standards.
Group and standard | Description | Reference articles | |
: nomenclature and terminology | |||
| HNA/NIC | Classifications of nursing activities and interventions | A29 |
ICDx | Family of international classification of diseases | A11, A28, A29, A44 | |
LOINC | Code names for identifying medical observations | A47 | |
SNOMED CT | Terminology collection of medical terms | A11, A28, A47 | |
UMLS | System of medical vocabularies | A11, A13 | |
| HIPAA | USA legislation for medical information | A09, A22, A25, A35 |
| ASC X12N | Accredited standards committee X12-INS | A45, A47 |
CCD | Specification for exchange clinical documents | A11, A47, A48 | |
CCR | Specification for sharing continuity of care content | A11, A33 | |
CDA | Specification for clinical notes | A11, A47 | |
DICOM | Standard for medical digital imaging | A11 | |
| EN 13606 | EHR standards in Europe | A25 |
HL7/FHIR/SMART | Family of standards and platforms based on the HL7 reference model | A11, A18, A28, A42, A43, A45, A47 | |
ISO | TR (Technical Report) 14292 (PHR) and ISO/IEEE 11073 Personal Health Data (PHD) | A01, A03, A20, A23, A25, A38, A43, A47 | |
openEHR | Open standards specification in eHealth | A11 | |
xDT | German family of data exchange formats | A04 | |
| OpenMRS | Platform and reference application named Open Medical Record System | A42 |
OSCAR | EHR system named Open Source Clinical Application and Resource | A42 |
a GS: group of standards.
b HNA/NIC: Home Nursing Activities/Nursing Interventions Classification
c EHR: electronic health record.
d ISO: International Organization for Standardization.
Upon analyzing the selected articles, we identified a set of profiles or user types that have access to the electronic patient record, which vary from the physician, who is primarily responsible for the PHR information, to the patient. The types of access also include the possibility that some data may be publicly available, for example, on social networks [ 19 ]. There are multiple stakeholders involved in accessing the PHR, such as patients, providers, employers, payers, governments, and research institutions [ 6 ]. In Multimedia Appendix 3 , we present the details of the profiles that have been identified. We can see that the physician is widely referenced, while the nurse and administrative profiles are not cited as often. Among the laity, the patient profile is often cited; however, the relative or guardian profile is less commonly cited. We also included a public profile because patients might share their information anonymously in some cases or for other cases in which public administration sectors provide open statistical data.
In the following section, we present a brief description of the perceived profiles:
Physician or doctor—the physician, in this assessment, is the health professional profile responsible for reporting patient data in consumer electronic records.
Nurse—according to the International Standard Classification of Occupations [ 68 ], nursing professionals provide treatment, support, and care for people who need nursing care owing to the effects of aging, injury, disease, or other physical or mental impairments or face potential risks to their health.
Administrative—this profile refers to all administrative health professionals who are not directly linked to the data generation but have informational access for bureaucratic, statistical data gathering or financial information needs.
Patient or consumer—this profile refers to the PHR principles; some authors also refer to the patient as a consumer of health care [ 14 , 26 ].
Relative—this profile is composed of parents, guardians, caregivers, responsible legal individuals, or anyone who has the patient’s permission to access his or her PHR.
Public or anonymous—this refers to profiles with external access in an anonymous or public way, such as institutions, the government, researchers, health plans, third parties, and even social networks.
This research question seeks to describe the interaction types of a patient with a PHR, that is, the types of relationships that a patient has using the PHR. In the following section, we present a brief description of the interaction types that were identified when analyzing the articles:
Direct—in this case, the patients are the owners and manage their health data in the PHR. Reference articles: A02, A05, A09, A12, A25, A26, A31, A48.
Indirect—in this case, the patient has read-only access and cannot edit the data. The health care providers are the owners, and the patient can only download or print the health records. Reference articles: A01, A05, A22, A25, A26, A40, A41, A42.
Outsourced—in this case, the patient authorizes a third party to handle the health data or the responsible parties (eg, parents) manage the patient's health records. Reference articles: A02, A03, A04, A07, A18, A24, A25, A28, A37, A48.
Another result was the identification of techniques and actors that interact in the process of data collection for inputting into a PHR. Table 9 presents some answers to this specific research question, summarizing the techniques of inputting the relevant data into PHRs.
Techniques for inputting information into personal health records.
Techniques and profiles (actors) | Description | Reference articles | |
) | |||
| Health professionals | Collaboration between multiple health care professionals. Health care providers are the owners (paternalistic relationship). | A08, A09, A12, A15, A22, A23 |
| Patient | Patient reports data, for example, listing drugs that are being used or menstrual period data. | A23, A26, A47 |
| Environment | Aggregate sources provisioning individualized personal eHealth services combined with context information, including monitoring sensors. Patient and health care providers collaborate for inputting data into PHR . | A01, A26, A38, A43, A44 |
| Anonymous | Anonymizing social network data. | A16, A44 |
a T: technique.
b PHR: personal health record.
This information follows standards and is intended to structure and standardize the data provided. We list the main actors that provide the data, including health professionals and the patients themselves, which are gathered from the environment, including anonymously. The techniques (T) identified for inputting data range from data collaboration (T1), to patient reports (T2), adaptive platforms (T3), and anonymization (T4). Table 9 also includes articles in which these techniques and actors are cited. In short, this was the actors’ group that was identified with a relevant interaction in collecting data for inputting data into the PHR.
This research question includes the main goals of the PHR. This question is intended to identify the purpose that a PHR has in a broad context and that applies to any profile that has access. In the following section, we present a brief description of the interaction types:
Consult—in this case, the purpose is to allow the profile to only consult (in read-only mode). Reference articles: A01, A03, A07, A10, A13, A15, A16, A17, A21, A39, A47.
Maintain—in this case, the user profile is allowed to maintain and control the health records. Reference articles: A09, A16, A18, A22, A29, A33, A37, A46.
Monitor—in this case, the PHR is in monitoring mode and can send alerts or warnings for one or more profiles; the goal is to help the patients monitor their health. Reference articles: A01, A07, A10, A20, A23, A25, A29, A40, A43, A45.
The purpose of this question is to identify the types or models of architecture in which a PHR can be implemented. When analyzing the articles, as seen in Table 10 , the architecture types (architecture group, AG) were split into two groups: model (AG1) and coverage (AG2). The first group, AG1, describes the main architecture models. The second group, AG2, divides the data based on the physical location, that is, the scope of the PHR.
Personal health record architecture types or models.
Group and item | Description | Reference articles | |
: model | |||
| On paper | Health records are kept on paper | A08, A20, A22 |
| Inside | PHR is kept in local repositories, inside the provider, for example | A02, A03, A16, A20, A31 |
| Outside | PHR is distributed or shared between servers outside the provider | A01, A03, A24, A35 |
| Hybrid | PHR is distributed inside and outside the provider | A02, A10, A28, A35, A47 |
| Stand-alone | Data coverage is used only in the provider area | A11, A26, A45, A46 |
Local | Area is at the city level | A03, A11, A20, A29, A35 | |
Regional | Data are used in the state or province | A02, A04, A25, A37, A45 | |
National | Coverage encompasses the nation | A09, A12, A28, A34, A35 | |
International | Coverage transcends the nation | A09, A16, A28, A30 |
a AG: architecture group.
In this study, we sought to identify a quantitative and qualitative sample of studies that enabled us to obtain a clear overview of the technology regarding PHRs in the last 10 years from a number of candidate articles. This research sought to highlight some of the most relevant studies of the field according to certain systematic selection criteria. The survey sought to identify several common aspects of studies by answering a number of research questions. As a result, we were able to propose a PHR taxonomy and identify gaps to be further researched that represent challenges and issues that have been detected in recent years. These aspects range from patients’ concerns to providers’ problems regarding PHR adoption. In addition, we have identified the data types included in PHRs, an updated tabulation of the data standardization, access profiles and their characteristics, and, finally, a classification of input techniques. We also identified other common and related aspects. These opportunities are discussed as follows.
For the GQ1 research question , we sought to define a PHR taxonomy, which is presented in Table 5 . Our proposed taxonomy illustrates the PHR types and their organization according to several studies that were analyzed. We primarily identified three major groups of PHR organization types: (1) Structures, (2) Functions, and (3) Architectures. From these groups, we were able to examine the PHR types in depth to understand each one of them. These groups also showed that there are PHR application initiatives on several fronts with concerns that range from features and content to architectural format in terms of PHR implementation [ 54 ].
For the GQ2 research question , we sought to define the main challenges and issues regarding the use of PHRs. There are many open questions to be further researched in the area of PHR. The challenges and constraints in the adoption of PHRs are diverse. Some research results indicate problems of usability, privacy, security, and complexity in the use of PHRs, ranging from fears of including erroneous data to the difficulty of interpretation as the main difficulties [ 1 , 48 ]. In Table 6 , we describe some challenges and issues that may give rise to future studies. According to the number of items in each group in the table, we notice a greater concern with the first three groups, although we cannot claim this assessment as being definitive. One possibility that we touch upon for this observation is that the integration of standards and interoperability, as well as the nomenclatures and terminologies, are already in a stage of stability and consolidation. This leads us to reinforce the thesis that the concerns of the authors at this time are the issues raised by the first three groups of problems. That is, the concerns and challenges are more focused on discussions regarding confidentiality, integrity, authorization, access control, portability, efficiency, scalability of solutions, and issues related to user experience.
With respect to the SQ1 research question , we sought to define an updated ranking on data types in PHRs. Upon analyzing the studies, we observed that PHR data types have evolved since the first PHRs [ 6 , 37 ]. The data types found include groups that are not usually included in EHRs. Among the EHR stored data are medications, prescriptions, scheduled appointments, vital signs, medical history, laboratory information, immunizations, summaries, scanned documents, billing information, and progress notes about changes in the patient's health [ 4 ]. However, in PHRs, new data types have emerged, including genetic information [ 47 , 51 ], medical advice (recommendations), and prevention concerning the patient's health, as well as data types with recommendations for prevention and home monitoring data [ 9 , 15 ]. Other data types that appear in PHRs are allergies, patient registration data, and insurance plan information, including demographic data such as age, sex, and education. Furthermore, information on the patient’s family, social history, lifestyle, food, diet, daily activities, and a list of providers who treated the patient previously are included in PHRs.
For the SQ2 research question , we sought to define a current view of PHR standards. The result was the identification of the current list of existing data standards used in PHRs. We observed several standards that were maintained by various stakeholders that were located in different countries and regions. We were also able to observe a consolidation of some patterns in the articles’ citations, such as ISO [ 4 , 10 ] and HL7 (Health Level Seven) [ 29 ], which are used to define and establish interoperability between the systems. When analyzing the articles, it was observed that all the standards listed can be used directly or indirectly with a PHR. However, their purposes are diverse. Some standards have specific goals, for example, DICOM [ 42 ] and SNOMED CT [ 65 ], while others have broader purposes, for example, HL7 [ 29 ] and openEHR [ 67 ], which can be integrated with other specific standards to render the solution. Finally, we identified some open systems or platforms that serve as templates, which use some of the listed standards to propose management solutions for patients’ health data.
In the SQ3 research question , we sought to define the PHR user types and profiles that address PHR. The result was the identification of updated profiles as well as their characteristics. For the security and privacy of the health data, the answer to this research question offered a clear definition of the profiles that are allowed access to the PHR and what their responsibilities are [ 11 ]. In terms of access profiles, although the PHR is focused on personal use, the idea is that a patient can also delegate access to third parties by choice or necessity, as in the case of children or people who need special care. These third parties can access all or only specific parts of the PHR dataset. Patients can share their PHR for various purposes. Such patients may be minors whose parents need to share their health data with physicians, people with special needs who require constant monitoring, or even patients who wish to share their health data with other physicians. By analyzing the selected articles, it was possible to find multiple profiles that have access to the PHR. We can therefore highlight the following profiles: patients, physicians, nurses, relatives, administrators, and the public. A physician’s tasks include recording the health information and medical history of the patients as well as exchanging information with practitioners and other health care professionals [ 68 ].
In cases where patients need emergency care, a primary care physician usually treats them. If more specialized care is needed, the physician indicates the need for a specialist. Furthermore, physicians must report births, deaths, and notifiable diseases to the government. Because the PHR is composed of health data that are stored for a lifetime, many physicians edit the PHR over time. Otherwise, in the case of an administrative profile, these professionals usually have limited and controlled access to the medical records. This profile is considered internal access, which is not to be confused with external access institutions. With the patient profile, the user can manage the information provided in his or her repository. The purpose is for patients to have access to their health data and use them throughout their lives [ 65 ]. This set of information is established at different moments over time, for example, for each medical consultation, laboratory test, and hospital admission. Nevertheless, there is a clear distinction between what was reported by health professionals and what the patient reports. Thus, the PHR offers an exact distinction between what was reported from each profile in its repository. In the case of a relative profile, some authors distinguish these profiles in terms of accessing the PHR with some limitations or full access with the permission of the patient [ 5 , 23 , 65 ]. Additionally, in the case of public or anonymous profiles, the health data can be accessed in a limited or shared way, in which the PHR has a public and social nature to help other patients [ 47 ].
In the SQ4 research question , we were able to identify three types of patient interactions with the PHR. In the first type, according to the definition of the PHR in ISO 14292 [ 10 ], the patient manages and controls the health data directly. In the second case, the patient only acts in a supporting role as a complementation of EHRs but does not have effective control. Finally, in the third type the patient outsources the management of the health data to a responsible person.
Regarding the SQ5 research question , we sought to define the main techniques to input data into the PHR. As a result, with the analysis of the selected articles presented in Table 9 , we can identify the techniques and profiles of the actors who use them. In the data collaboration (T1) technique, different health professionals access the PHR aside from the patient. The patient remains the PHR owner, but health professionals collaborate on input records in an identifiable and controlled way. In the second case, patient reports (T2), patients alone are in charge of inputting their medical record data without any support. In the third form, adaptive platforms (T3), the reported data and the data collected from the EHR are integrated with the PHR data. In this case, data obtained from different sources and contexts are combined. The purpose is to provide better management of the patient's condition. For instance, it would be possible to provide real-time access to sensitive patient information and ease communication among patients and providers. In the case of the anonymization (T4) technique, medical data can be integrated with a social network, where the patient can share his or her status anonymously and receive contributions from other users.
In the SQ6 research question , we sought to identify the PHR use purposes. This research question is related to the specific question SQ3, which aims to identify the objectives of the user profiles when accessing the PHR. We have identified three objective types. In the first case, the user profile accesses the PHR to only verify the health data without manipulating them. One example here includes health professionals or administrators who have permission to only view the data. In the second case, the user profile has permission to manipulate the data. In this situation, it is important to highlight the need to identify and control the profile that has changed the data and which data have been changed. In the third case, the user profile only monitors the records. An example of this might be a case in which the PHR receives data from sensors (IoT) and can send alerts depending on a situation.
Finally, in the SQ7 research question , we identified the architectures related to PHRs. We divided them into two groups: types (AG1) and coverage areas (AG2), as seen in Table 10 . In the case of architecture models, some articles state that health data are still stored on paper in many places, and other institutions have evolved into the proposed hybrid architectures with the PHR distributed inside and outside the health care organizations. In the case of the possibilities of coverage areas, we identified types ranging from a stand-alone PHR on a single machine to PHRs that can be taken from one country to another following an open international standard.
This research is limited to aspects related only to PHRs rather than also including EHRs or electronic medical records, for example. In this sense, the review focused exclusively on articles addressing the inherent PHR concepts. This research sought to answer the research questions that were proposed in order to obtain an outline of the current literature related to PHRs without specifically assessing any computer system that refers to the use of PHR. The research was limited to obtaining articles published in a number of scientific portals related to ICT and health. Our research was reduced to studies found from these websites when we implemented the steps of the systematic literature review methodology. We focused our work on scientific articles and did not address commercial or more technological approach solutions.
This study aimed to raise and discuss the main issues regarding PHRs and identify the concepts of the technology in this area. To answer the research questions in this paper, we sought first to systematize and qualify the information that served as a source for the survey. For the completion of the work, we were able to identify and propose a broad taxonomy for the scope of work, which was created after an analysis of the relevant articles in the last decade. In the taxonomy, we were able to identify and group a number of types and PHR classifications ranging from “Structures” and types associated with “Functions” to the types of “Architectures” applied to PHRs. Having established the taxonomy, it was possible to observe other important relationships to understand PHRs. We noticed aspects regarding concerns and challenges in the adoption of PHRs as well as the main data types. In addition, we were able to identify several standards regarding PHR, where it was possible to verify those that were most important in the current scenario. Regarding user profiles, we identified the main users representing these types of profiles, as well as their responsibilities when they access PHRs. We were able to identify the techniques and methods used in the input of information into PHRs.
Finally, aside from answering all the specific research questions and relating them in the taxonomy, we can also rank the PHR with regard to goals, negotiation types, and architectures. The answers and classifications obtained contribute to the achievement of a coverage degree of searches that are identified in various aspects regarding the PHR. The physician-patient relationship traditionally consists of total dependence of the patient on the physician. In addition, the fragmented nature of the health system can impose a costly burden on physicians. The PHR can be a solution to this problem, although obstacles still persist, including support for reaching this paradigm, where the ownership of the data belongs to the patient.
In future studies, we envision a focus on the challenges and issues related to security, privacy, and trust, which directly affect the users’ confidence in adopting the PHR. Although these questions have existed for a long time, they do not have definitive answers yet. Other aspects that can be studied and that are important to improving the user experience are questions about usability, personalization, familiarity, and comfort. Another aspect that can serve as a future study is to explore the models of architecture and the implementation of PHR following the expansion of the use of technologies such as wearable computing, IoT, and artificial intelligence that are applied to health.
The authors would like to thank the Brazilian National Council for Scientific and Technological Development (CNPq) for supporting this work.
AG | architecture group |
DICOM | Digital Imaging and Communications in Medicine |
EHR | electronic health record |
ePHR | electronic personal health record |
GQ | general question |
HL7 | Health Level Seven |
ICT | information and communication technology |
IoT | Internet of Things |
ISO | International Organization for Standardization |
iPHR | intelligent personal health record |
GS | group of standards |
PHR | personal health record |
PICOC | population, intervention, comparison, outcome, and context |
SQ | specific question |
UHR | universal health record |
Multimedia appendix 2, multimedia appendix 3, multimedia appendix 4.
Conflicts of Interest: None declared.
Transforming the understanding and treatment of mental illnesses.
Información en español
Genes are segments of deoxyribonucleic acid (DNA), the biological “blueprint” for proteins that form the building blocks of our cells. Your DNA is passed down from your biological parents and varies a little from person to person. These variations contribute to differences in appearance, personality, and health. Certain genes, along with biological and environmental factors, can be associated with mental disorders, which are health conditions that can affect how you think, feel, and cope with life.
Common mental disorders like depression and anxiety are likely the result of a combination of life experiences, environment, and genetic variation. These variations can impact how your genes are turned “on” and “off” throughout life and play a role in the onset of some diseases.
Most genetic variants don’t directly cause mental disorders. However, in rare cases, some uncommon gene variants can increase the risk of developing mental disorders. If you or a relative has one of these rare variants, it’s a good idea to talk to a health care provider about the risks.
Genetic counseling can give you information about how genetic conditions might affect you or your family. A geneticist or genetic counselor will collect your personal and family health history to determine how likely it is that you or a family member has a genetic condition. They can then help you decide whether a genetic test might be right for you or your relative. Genetic testing is often done before or during pregnancy, soon after birth, or if your health care provider suspects you may have a genetic disease.
To learn more about genetic counseling, visit the Genetic Counseling FAQ page of the National Human Genome Research Institute website and the Centers for Disease Control and Prevention’s Genetic Counseling webpage.
Currently, genetic tests cannot accurately predict your risk of developing a mental disorder. Although research is underway, researchers are still learning about the ways genes can contribute to mental disorders—or protect against them. Of those genes that are linked to mental disorders, most raise the risk by tiny amounts.
While recent studies have begun to identify the genetic markers associated with certain mental disorders and eventually may lead to better screening and more individualized treatment, it is still too early to use genetic tests to diagnose or treat mental disorders.
Clinical or diagnostic genetic testing.
Clinical genetic testing can help predict the risk of some diseases, such as cancer, but is not yet very useful for predicting the risk for mental disorders. Health care providers may order genetic testing for people who may have a high risk for rare genetic diseases. During testing, health care providers may search for a single gene or a few genes that are strongly associated with a specific disease.
There are many different types of genetic tests that may help to:
If a disease runs in your family, your health care provider can tell you if it’s detectable with genetic testing. Learn more about clinical or genetic testing .
The purpose and audiences of direct-to-consumer genetic reports differ from clinical or diagnostic genetic testing.
For a fee, anyone can mail a saliva sample to companies that sell a direct-to-consumer genetic report. While advertisements may say that the company can provide information based on a person's genetic variation about their risks of developing specific diseases, these reports typically cannot help predict one’s risk for developing mental disorders.
Because direct-to-consumer genetic reports for mental disorders are not accompanied by a health care provider’s guidance, their results should be interpreted cautiously. These reports have varying levels of scientific support, may or may not be approved by the U.S. Food and Drug Administration, and can be misleading. If you decide to undergo direct-to-consumer genetic testing, the results should be discussed with your health care provider or genetic counselor before taking any action, such as changing your medications. Learn more about direct-to-consumer tests .
Some mental disorders run in families, and your family’s mental health history may be an important clue for determining your risk of developing a mental disorder. Having a close relative with a mental disorder could mean you are at a higher risk, but it doesn’t necessarily mean you will develop that disorder. Many other factors play a role.
Knowing your family’s mental health history can help you and your health care provider look for early warning signs and help your health care provider recommend ways to reduce your risk.
The first step in creating a family health history is to talk to your relatives. The most helpful information comes from “first-degree” relatives—parents, brothers, sisters, and children. Health histories from “second-degree” relatives—such as nieces, nephews, half-brothers, half-sisters, grandparents, aunts, and uncles—also can be helpful but are less informative for your own risk.
Don’t worry if you can’t get complete information for every relative. Some people may not want to talk, and others may be unable to remember information accurately. That’s okay. Whatever information you can collect will be helpful.
Free programs like the Surgeon General’s “My Family Health Portrait” can help you create a family health history. You can use the program to record information about your family’s health and share it with your health care provider or family members.
New or updated information can be added as a family grows or family members are diagnosed with health conditions. It may take a little time and effort, but this record can improve your family’s health for generations.
If mental disorders run in your family, consider talking with a mental health professional who can help you understand the illness’ risk and ways to prevent or treat it. Asking questions and providing information to your health care provider can improve your care and results and increase safety and satisfaction. For tips and information about speaking with your health care provider from NIMH and the Agency for Healthcare Research Quality .
NIMH funds and conducts research to help answer important scientific questions about mental disorders. NIMH is currently studying and supporting research on the human genetic variations that contribute to the risk of different mental disorders. These include but are not limited to the following:
Research investigating these topics will help the field take steps toward better screening and personalized treatment. Basic research efforts enhance our understanding of the underlying causes of disease and might result in improved clinical treatments. Learn more about ongoing research efforts .
For information about how genes affect your risk for developing a disease or disorder, visit:
You can learn more about getting help on the NIMH website. You can also learn about finding support and locating mental health services in your area on the Substance Abuse and Mental Health Services Administration (SAMHSA) website.
Clinical trials are research studies that look at ways to prevent, detect, or treat diseases and conditions. These studies help show whether a treatment is safe and effective in people. Some people join clinical trials to help doctors and researchers learn more about a disease and improve health care. Other people, such as those with health conditions, join to try treatments that aren’t widely available.
NIMH supports clinical trials across the United States. Talk to a health care provider about clinical trials and whether one is right for you. Learn more about participating in clinical trials .
Learn more about mental health disorders and topics . For information about various health topics, visit the National Library of Medicine’s MedlinePlus .
The information in this publication is in the public domain and may be reused or copied without permission. However, you may not reuse or copy images. Please cite the National Institute of Mental Health as the source. Read our copyright policy to learn more about our guidelines for reusing NIMH content.
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health NIH Publication No. 24-MH-4298 Revised 2024
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Gravel cycling event attracts new riders to annual event.
Contributing writer Ohio State Wexner Medical Center
Kate Bartalon wanted to be part of a new chapter in Pelotonia ’s history, while Matthew Old, MD , was determined to keep his iron-cyclist streak going.
“I’ve always regretted not being part of the first Pelotonia (in 2009),” says Bartalon, executive director of development at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James). Pelotonia is the fundraising bicycle event that has raised more than $283 million for cancer research at the OSUCCC – James .
Before the 2023 ride, Pelotonia announced it would offer something new: its inaugural Gravel Day ride , held a month after the traditional Pelotonia ride weekend in August.
“I signed up for the gravel ride; I wanted to be part of an inaugural Pelotonia event,” says Bartalon, who had ridden in seven previous Pelotonia events. “The gravel ride was an absolutely wonderful experience, and I was grinning from ear to ear the whole ride.”
Dr. Old, director of the OSUCCC – James Head and Neck Cancer program, is one of the few who has ridden every mile of every Pelotonia, from its inaugural year in 2009, a total of more than 2,500 miles.
“At first, when I heard about the gravel ride, I was anxious and worried,” Dr. Old says.
He wasn’t worried about riding on gravel. “I was nervous it would be on a weekend where I already had a commitment and wouldn’t be able to ride and keep the streak going,” Dr. Old says. Fortunately, his schedule worked out and Dr. Old rode the longest gravel route (50 miles), in addition to riding the longest routes of Pelotonia Ride Weekend, to keep his every-mile streak alive.
“Pelotonia is important to me because it’s something much bigger than any one of us. Seeing this support and connection with the community is so important and a great reminder of why we do what we do,” Dr. Old says.
Gravel riding has become increasingly popular in the past decade, and Ohio is filled with miles and miles of rural, gravely roads.
“The idea came mainly from feedback from the community,” says Joe Apgar, CEO of Pelotonia.
“More and more of our riders had started riding on gravel and it came up more and more in conversations within the Pelotonia community. A lot of us felt there was a space for us to add a gravel ride the same way there was a space in 2009 to start Pelotonia.”
Pelotonia’s first Gravel Day ride in 2023, attracted 190 riders who chose between 20-, 30- and 50-mile loops near Nelsonville in rural Athens County. About half of these history-making gravelers were new to Pelotonia, which advanced the goal of attracting new cyclists. “It was one of the most fun days I’ve ever had on a bike,” Apgar says.
The number of gravel riders is expected to double in 2024 for the second Gravel Day on Sept. 21 according to Apgar. In addition to the 22-, 30- and 52-mile routes, Gravel Day 2024 will offer a Friday Night Community Gathering and overnight camping options for riders and volunteers the entire weekend.
David Cohn, MD, MBA , interim CEO and chief medical officer of the OSUCCC – James, has ridden in every Pelotonia and wasn’t about to miss the first gravel ride. “We can’t do what we do in creating a cancer-free world and trying to get to tomorrow’s discoveries today without Pelotonia,” Dr. Cohn says.
Dr. Old is a member of the Team Head and Neck peloton , a team of riders that includes members of The James staff as well as some of the patients treated by Dr. Old and his team. The peloton is captained by his wife, Molly Old. Under her leadership, the Team Head and Neck peloton has raised $1.4 million for cancer research at the OSUCCC – James. Their peloton is part of the Team Buckeye superpeloton that has raised $37 million.
“It’s our patients who inspire and push me,” says Dr. Old when asked to describe his determination to ride every mile of every Pelotonia.
“No matter how much we’re suffering on a ride, they’re suffering more during their treatment and that pushes you to keep going and to do more,” Dr. Old says.
Several of Dr. Old’s patients are Pelotonia riders and volunteers, and others line the route and finish line to cheer on the riders and reconnect with their treatment team.
“Every year I see some of my patients and that’s so inspiring,” Dr. Old says. “To see patients who are still here because of what we do and because of the research and discoveries that are funded by the Pelotonia community motivates me.”
His grandfather’s head and neck cancer journey, which ultimately ended in his death, helped inspire Dr. Old’s career choice and commitment to his patients. “Due to the research and advances we’ve made, I believe there’s a good chance he would still be here if he was diagnosed today,” Dr. Old says.
Dr. Old needed a bit of motivation as he rode the longest of the gravel routes. “It was really hard in terms of the elevation gain,” he says. “But knowing that we’re doing this for our patients and for the research we’re funding made it easy to keep going.”
Bartalon waited until June 12 to sign up for Pelotonia and the gravel ride, several months after registration began, but she wasn’t procrastinating. “That’s the anniversary of my mom’s passing,” she says. “I ride for my mom and for my dad, who we lost to cancer.”
Bartalon has seen the power of Pelotonia and how it connects members of The James with thousands of members of the community in central Ohio and beyond. “So many members of the Pelotonia community are here because they’ve connected with one of our doctors,” she says. “That’s one of the things I enjoy the most at Pelotonia, seeing so many of our physicians and research scientists riding alongside of us and seeing all the survivors and people riding for the loved ones they’ve lost. To be part of this community and experience is extraordinary.”
Like Dr. Old and Dr. Cohn, Bartalon was a gravel rookie. She borrowed a friend’s gravel bike (gravel bikes have wider tires and often shock absorbers). “I was a little nervous as a new gravel rider, but the beauty of Athens County and being on Pelotonia’s first gravel ride and the excitement at the finish made it an incredible experience,” Bartalon says.
Learn more about Pelotonia and Gravel Day.
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When immunotherapy triggers autoimmune and other side effects, a unique clinic is giving patients relief.
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The use of herbal medicines is one of the oldest health practices, typically involving plants, fungi, their metabolites, and minerals with the traditions passed on orally or in written records. Dietary and complementary/alternative medicine has become an important element in healthcare. In many regions of East Asia, these approaches are integrated into formal medical treatments. In the United States, surveys indicate that more than 50% of adults use herbal medicines. Historically, herbal medicines have often not been classified as "medicines/drugs" but as "foods," leading to a general perception of them as harmless. Studies show that patients often do not inform their doctors about their use of herbal medicines, which may result in potential drug interactions and adverse events. This is concerning as improper use of herbal medicines is associated with risks such as liver injury and cardiovascular diseases. Due to their complex composition and multi-target properties, various herbal medicines can cause multiple adverse reactions. Drug-induced liver injury is a recognized clinical problem, and herb-induced liver injury has received increasing attention. Studies indicate that the use of drugs and herbal medicines accounts for a significant proportion of acute liver failure cases. Although improper use of herbal medicines can lead to various health problems, the underlying mechanisms are often not fully understood. With technological advances, the application of multi-omics (including genomics, transcriptomics, metabolomics, etc.) and the use of artificial intelligence present new opportunities for understanding such risks of herbal medicines. These technologies aid in understanding the complex nature of herbal medicines and their biological effects. We encourage the submission of different types of contributions including original research, reviews, clinical trials, and detailed case reports. We are particularly encouraging contributions that utilize advanced technologies in this field, such as multi-omics research, artificial intelligence-assisted technologies, clinical big data analysis, and reports on rare cases. All studies must be driven by empirical data and purely in silico studies are outside of the journal’s scope. These studies should focus on the following areas: • Pharmacological studies assessing the treatment of drug-induced liver injury caused by herbal medicines. • Novel research approaches and methods for assessing herb-drug interactions • Cardiovascular risks caused by herbal medicines, including arrhythmias, heart failure, atherosclerosis, and vascular inflammation. • Neurological damage caused by herbal medicines, including behavioral abnormalities. • Respiratory injuries caused by herbal medicines, such as pulmonary fibrosis. • Mechanisms of drug interactions caused by herbal medicines and developments of evidence-based applications of modified treatments in clinical practice, particularly in the elderly and children. Overall, by leveraging advanced methods and pharmacological strategies, we aim to deepen our understanding of the safety and clinical application of herbal medicines. Please note : 1) Please self-assess your MS using the ConPhyMP tool (https://ga-online.org/best-practice/), and follow the standards established in the ConPhyMP statement Front. Pharmacol. 13:953205. All the manuscripts need to fully comply with the Four Pillars of Best Practice in Ethnopharmacology (you can freely download the full version here ). Importantly, please ascertain that the ethnopharmacological context is clearly described (pillar 3d) and that the material investigated is characterized in detail ( pillars 2 a and b ). 2) Clinical trial articles will be accepted for review only if they are randomized, double-blinded, and placebo controlled. Statistical power analysis or a justification of the sample size is mandatory as is a detailed chemical characterization of the study medication (see the ConPhyMP statement). 3) In silico studies like network analyses or docking studies are generally not accepted unless they are combined with detailed in vitro or in vivo analysis of the material (extract) under investigation.
Keywords : Herbal medicines, drug safety, drug-induced liver injury, drug interactions, clinical application of drugs
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Nearly half of Americans with health insurance said they received a recent medical bill or a charge that "should have been free or covered by their insurance," according to a survey released Thursday.
The survey, from the Commonwealth Fund in New York City, found 45% of working-age consumers last year were erroneously billed, however, fewer than half of those patients challenged their health insurance company or a medical provider about the unexpected charges.
More than 1 in 3 consumers who contested surprise medical bills said the extra work paid off and the costs were reduced or eliminated.
Officials at the Commonwealth Fund said the survey underscores a fundamental problem in the health care system. People expect their health insurance plan to provide access to timely medical care and protection from financial harm, but, instead, they frequently face unexpected medical bills or are denied care.
Sara Collins, Commonwealth's vice president for health care coverage and access, said the survey documents the reality many Americans are experiencing. Consumers often don't know what their insurance plans will cover or which services provided by their doctors or other providers will show up on their bills . The lack of transparency from officials overseeing insurance coverage and medical bills confuses patients and saps their confidence that they'll get the care they need.
The bottom line for consumers: Health insurance often does not guarantee affordable, timely care for consumers "without fear of incurring a lot of medical debt," Collins said.
The survey aimed to address a basic question: Why do so many Americans struggle to get their health insurance to work for them?
To answer that question, the survey polled more than 5,600 insured working-age adults under 65, between April 18 and July 31, 2023. The survey tracked figures based on consumers' insurance plan. It looked at employer-sponsored insurance and Affordable Care Act plans or Medicaid, the government insurance program for low-income families and individuals. Some survey respondents also had Medicare, the federal health insurance program for adults 65 and older. Disabled individuals are eligible for Medicare at a younger age.
Consumers said they were confused by their health plan's complex rules and coverage exclusions. While Affordable Care Act plans require preventive care coverage for annual checkups or colon cancer screening free of charge other types of insurance do not mandate these services to be offered for free. Individual states can also impose specific requirements about what services must be covered.
More than half of the people who said they didn't challenge medical billing errors said they were unaware they had the right to do so. The survey said consumers under 50, people with low-to-moderate incomes and Hispanic residents were the least likely to challenge a medical bill.
Another 17% of consumers said their insurance plans denied coverage for a doctor-recommended medical service or procedure. When an insurance plan refused to cover care, 47% of consumers said their health condition worsened.
The underlying reason so many consumers get unexpected medical bills is the expensive prices set by hospitals, doctors and drug companies, said Ge Bai, a Johns Hopkins University professor of accounting and health policy and management.
"A fundamental reason is our health care prices are so expensive, and many employers will go to high-deductible plans," Bai said.
High-deductible health insurance plans typically require consumers to pay a set amount out of pocket before most coverage kicks in. The Internal Revenue Service defines a high-deductible health plan as one that charges an annual deductible of at least $1,600 for an individual or $3,200 for family coverage.
Most employers who provide health insurance for working-age adults have turned to high-deductible plans. This allows companies to deduct less from workers' paychecks for premiums. The tradeoff is people need to shoulder more of the cost at the hospital, doctor's office or pharmacy before their coverage kicks in.
Bai recommends consumers evaluate what type of health care they need before selecting a health insurance plan. If they pick a plan with a high deductible, they can budget for expenses when they visit a doctor or pharmacy.
Healthy people can expect to cover most of their health care costs because more often than not they don't meet their plan's deductible, Bai said. But they still need catastrophic coverage in the event they need emergency care or are diagnosed with a costly medical condition, such as cancer.
Consumers with chronic medical conditions such as cancer might choose a health insurance plan with more robust coverage.
A recent American Cancer Society study found nearly 3 in 5 working-age adults with cancer faced at least one financial challenge. They took unpaid leave or lost jobs or health insurance, the study found. In the aftermath of these losses, they suffered financial problems that made it difficult to cover costly cancer care . Some were forced to delay treatment and many reported the situation caused them stress.
The issue of Americans grappling with rising health care costs and medical debt has captured the attention of Congress.
In July, The Senate Health, Education, Labor & Pensions Committee held a hearing last month about potential fixes to the nation's growing medical debt problem. More than four in 10 adults reported having some medical debt. More than 1 in 10 Americans owed $10,000 or more in unpaid medical bills, according to Senate HELP committee documents.
"Medical debt is a symptom of a larger problem – the high cost of health care," Sen. Bill Cassidy, R-Louisiana said during the Senate HELP committee meeting.
Ken Alltucker is on X at @kalltucker, contact him by email at [email protected] .
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These issues result in health disparities and injustices. Examples of research topics about health inequities include: The impact of social determinants of health in a set population. Early and late-stage cancer stage diagnosis in urban vs. rural populations. Affordability of life-saving medications.
Here, we'll explore a variety of healthcare-related research ideas and topic thought-starters across a range of healthcare fields, including allopathic and alternative medicine, dentistry, physical therapy, optometry, pharmacology and public health. NB - This is just the start….
Exemplary Implementation of the Addressed Topics in the German Medical Informatics in Research and Care in University Medicine Consortium ... content, use and impacts of electronic health records: a review of the research literature. Int J Med Inform. 2008 May; 77 (5):291-304. doi: 10.1016/j.ijmedinf.2007.09.001. S1386-5056(07)00168-2 [Google ...
151+ Public Health Research Topics [Updated 2024] The important area of public health research is essential to forming laws, influencing medical procedures, and eventually enhancing community well-being. As we delve into the vast landscape of public health research topics, it's essential to understand the profound impact they have on society.
Although the benefits of EHR are well-received and Health Information Technology for Economic and Clinical Health (HITECH) Act encourages the use of EHR to improve care quality and efficiency, prior studies show mixed results of implementing EHR. 3 Recent studies suggest that full adoption of EHR might not be sufficient to ensure the benefits of EHRs; instead, meaningful use 4 or meaningful ...
EHRs are now mainstream in high-income countries, being used in over 75% of office-based practices and over 90% of hospitals in the United States 3. With longitudinal health data collected on ...
Abstract. Electronic health records (EHRs) provide opportunities to enhance patient care, embed performance measures in clinical practice, and facilitate clinical research. Concerns have been raised about the increasing recruitment challenges in trials, burdensome and obtrusive data collection, and uncertain generalizability of the results.
Health records have moved from the basement storage room under lock and key of major hospitals to digital clouds and hard-drives to increase accessibility and utility. ... and recognize that research on the topic of privacy and EHR has been conducted around the world. Because of the universal aspects of health information and privacy, it was ...
Additionally, we will outline the crucial elements that every health-related research paper should incorporate. Furthermore, we've compiled a comprehensive list of 300+ health-related research topics for medical students in 2023. These include categories like mental health, public health, nutrition, chronic diseases, healthcare policy, and more.
Abstract. Electronic health records (EHRs) provide opportunities to enhance patient care, embed performance measures in clinical practice, and facilitate clinical research. Concerns have been raised about the increasing recruitment challenges in trials, burdensome and obtrusive data collection, and uncertain generalizability of the results.
An electronic health record (EHR) digitizes a patient's paper chart. It collects the patient's history of conditions, tests and treatments and can be used to create a more holistic view of the patient's care. A medical EHR also improves upon paper by making the patient's information available instantly and securely to an authorized user. But for all these advantages, EHRs can create ...
Making Patients Part of Conversations About Their Care: Integrating Patient-Generated Health Data into Electronic Health Records. Using Health Information Technology (IT) for Primary Care Quality Improvement (QI) AHRQ's digital healthcare research program explores topics such as the use and adoption of electronic health records.
Abstract. Electronic health records (EHRs) were introduced to enhance patient outcomes and care quality. The adoption of EHRs and patient outcomes were compared in this study. Using State ...
Legal review: substance abuse record confidentiality and child abuse reporting requirements. Part 2. Legal review: confidentiality of drug and alcohol abuse patient records. Part 1. All 50 states ...
Using the Electronic Health Record in Nursing Research: Challenges and Opportunities.. PubMed. Samuels, Joanne G; McGrath, Robert J; Fetzer, Susan J; Mittal, Prashant; Bourgoine, Derek. 2015-10-01. Changes in the patient record from the paper to the electronic health record format present challenges and opportunities for the nurse researcher. Current use of data from the electronic health ...
For medical research, the best source is clinical trials, the type the Journal publishes on a weekly basis. But turning that research into policy is far more challenging. But turning that research ...
Key Topics. Each article includes beginner-level background information on the topic, a description of current activities in this part of the field, and lessons emerging from the array of projects sponsored by AHRQ. These articles also include recommended tools and resources for individuals engaged in health IT projects.
Electronic health records (EHRs) contain extensive longitudinal health information about patients and populations (1). Over the last decade, prompted by federal meaningful use guidelines and incentives, EHRs have become ubiquitous in health care settings (2). Because of their wide availability, EHRs are a viable option for disease surveillance ...
This page will lead you to sources for finding credible information on health information management. Continue below for these four (4) sections:. Find in-depth information in monographs (books) and find non-print material such as videos, audios, software, and multimedia.; Find current information in magazine and journal articles and reports.; Find federal and state rules and regulations ...
Medical research topics are the ideas or concepts related to health and medicine. They often explore new treatments, developments in diagnosis, prevention of illnesses, or even the effects of lifestyle choices. The scope of topics in medicine is vast and can include such aspects: Clinical medicine. Biomedical research.
In this cross-sectional study, we analyzed office-based physician responses to the 2019 National Electronic Health Records Survey, which collects nationally representative data on the use and burdens of the electronic health record (EHR). 3 The overall participation rate was 37.7%. 3 The Cambridge Health Alliance Institutional Review Board deemed this analysis of publicly available ...
Therefore, personal health records (PHRs) emerged from the EHR and are defined as health records related to patient care that are controlled by the patient [6,9]. The PHR can also be defined as a representation of the health information, wellness, and development of a person . The main advantages of the PHR refer to the ability of patients to ...
The National Institute of Health and Social Care Research (NIHR) Health Informatics Collaborative (HIC) for Hearing Health has been established in the UK to curate routinely collected hearing health data to address research questions. This study defines priority research areas, outlines its aims, governance structure and demonstrates how hearing health data have been integrated into a common ...
It may take a little time and effort, but this record can improve your family's health for generations. Talk with a mental health professional. ... Research investigating these topics will help the field take steps toward better screening and personalized treatment. Basic research efforts enhance our understanding of the underlying causes of ...
July 22, 2021 — A form of gene therapy protects optic nerve cells and preserves vision in mouse models of glaucoma, according to new research. The findings suggest a way forward for developing ...
As one of the largest academic health centers and health sciences campuses in the nation, we are uniquely positioned with renowned experts covering all aspects of health, wellness, science, research and education. Ohio State Health & Discovery brings this expertise together to deliver today's most important health news and the deeper story ...
Research suggests controversial super spikes do make runners faster Date: July 30, 2024 Source: University of Michigan Summary: Since athletes in the 2020 Tokyo Olympics smashed multiple records ...
Keywords: Herbal medicines, drug safety, drug-induced liver injury, drug interactions, clinical application of drugs . Important Note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements.. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or ...
The study was funded by grants from the National Institutes of Health (U01DK116312, R01DK056638, R01DK112976, R01HL069438, DK10513, CA230756, R01HL157948 and R35CA253127). RELATED TOPICS Health ...
In July, The Senate Health, Education, Labor & Pensions Committee held a hearing last month about potential fixes to the nation's growing medical debt problem. More than four in 10 adults reported ...