scholarly journals Meeting the health information needs of prostate cancer patients using personal health records

2013 ◽  
Vol 20 (6) ◽  
pp. 561 ◽  
Author(s):  
H.H. Pai ◽  
F. Lau ◽  
J. Barnett ◽  
S. Jones
Keyword(s):  
Prostate Cancer ◽  
Cancer Patients ◽  
Health Information ◽  
Information Needs ◽  
Personal Health Records ◽  
Personal Health ◽  
Health Records

Who is allowed to read and write?

2020 ◽  
Vol 19 (3) ◽  
pp. 116-117
Author(s):  
Christian P Subbe ◽  
Keyword(s):  
Information Needs ◽  
Healthcare Professionals ◽  
Personal Health Records ◽  
High Rate ◽  
Personal Health ◽  
Care Needs ◽  
Serious Adverse Events ◽  
Health Records ◽  
Clinical Records ◽  
The Way

What makes us human? In 2015 Jeremy Vine asked this question to a selection of leading British thinkers and writers. The answers were as diverse as the people he interviewed. While you might have your own views about the complexity of being human I would suggest that being able to articulate thoughts and communicate them to others might be one of the characteristics that distinguishes us from other life forms. And if we think more about the achievements of human culture then being able to communicate thoughts in writing and reading other people’s thoughts is one of the unique abilities that humanity has acquired during its evolution: Young humans spend extensive time to learn how to read and write. They write on paper, they read books and they do the same on computers. They become adults. They read and write most days: they e-mail their telephone company, file online forms to the tax office and or write romantic notes to their partner. Then they get older and become unwell and enter large modern building full of the most state-of-the-art technology. But here, in hospitals, none of them are allowed to read or write. They are being asked questions by someone who is often younger and in a rush. That person usually speaks a different language called jargon and try their best to translate their jargon to normal language.1 Patients are not allowed to write their own records and access to read the records is cumbersome. And if this is how we structure communication in our clinical practice then why are we surprised about the hierarchical relationship between patients and healthcare professionals and the high rate of error due to miscommunication? There might be good reasons for the way we document in healthcare: historically only the educated few like doctors were able to read and write and therefore the way to record patient histories had to be by those who were educated to do so. Additionally professions have always defined themselves by their own professional language and jargon that allows their members to describe matters precisely and at the same time create a sense of identity. Things have however changed in the last 100 years and a large proportion of our patients is able to read and write and might be perfectly capable to document their own information (and subsequently read all information that relates to them). The paper from Renggli et al in this issue of Acute Medicine explores the feasibility of documentation by patients on admission to hospital in Switzerland by using a web-based platform: at least half of the patients who were admitted with an emergency to hospital could document important parts their own medical history. The study demonstrated that documentation by patients added additional new information over and beyond of that collected by doctors and improved completeness of records, especially for the increasingly important social history. The paper has three important implications: Good information needs time: Patients can add more information if given the questions and their own time – rushing through an unprepared face-to-face consultation is unlikely to bring out the most relevant information in a reliable fashion. Sharing with patients might improve work-efficiency. Up to 25% of the time of doctors and nurses working in hospitals is taken up by documentation2,3: at a time when so many employed in healthcare are overworked and burnt out it would be reckless not to consider changes in information flow through the lens of work-load and efficiency. Quality care needs joint ownership with patients: Patients participation in the co-design and delivery of new services and shared decision of patients and clinicians in making of complex decision has been challenging to say the least. Co-ownership of clinical records is potentially a key strategic lever to achieve better decisions and services. Patient organisations and policy makers are expecting for patients to access medical records. Personal health records are now compulsory in some countries with roll-out of access for all citizens completed in countries like Estonia since 20084 and Sweden since 2018.5 It is National Health Service (NHS) policy to make a “personalized healthcare” available to everybody by 2020.6 That is now. Despite this there is virtually no evidence for the usage of personal health records in hospital.7,8 There are significant caveats to the current study: Half of the patients approached declined to take part and it is unclear why this was the case. Maybe they did not want to take part in any research. Maybe they felt too unwell to write. And maybe they were unable to read and write. While most people reaching adulthood in European countries have gone to school there is also evidence that up to 7 million adults in England are functionally illiterate and not able to read and write beyond the most basic level9 and relying on friends and family members, signs and symbols to travel through modern life. There is also an increasing body of work about digital exclusion and concerns that those who are unable to navigate the online world are at risk of being left behind by society.10 There are additional questions about ownership: do patients own all data that relates to their care or is documentation by healthcare professionals their intellectual property. There are strong arguments for both perspectives. From a patient safety point of view their would seem to be a strong imperative to come to pragmatic agreements. Research suggests that the majority of serious adverse events was flagged by patients and relatives at a time when they could have been predicted and potentially prevented by clinical teams.11 But safety critical information is often hidden from those who are most affected by it, the patients. The paper by Renggli et all does therefore provide important evidence for the development of a more co-operative and democratic way of providing acute care by using something that is a key part of being human: the ability to read and write.

Intention-Behavior Gap in the Use of Personal Health Records (PHRs)

2021 ◽  
Vol 13 (1) ◽  
pp. 18-35
Author(s):  
Younsook Yeo ◽  
Changsoo Sohn
Keyword(s):  
Health Information ◽  
Social Factors ◽  
Structural Equation ◽  
Personal Health Records ◽  
Equation Modeling ◽  
Future Research ◽  
Personal Health ◽  
Perceived Behavioral Control ◽  
Health Records ◽  
Actual Use

This paper examined an intention-behavior gap in individuals' personal health records (PHRs) adoption behaviors using Ajzen's theory of planned behavior (TPB) that incorporates social factors. Using structural equation modeling, the authors analyze the health information national trends survey data. The research found that all of the constructs, except for perceived behavioral control (PBC), shape intentions to use PHRs. However, PBC only predicts actual use. Individuals who have higher intentions tend to believe that healthcare providers should be able to share their patients' PHRs with other professionals and that scientists should be able to review de-identified patient PHRs. Individuals who perceive that a need exists for privacy control over their own health information tend to have higher intentions. The moderating social factors between intentions and actual behaviors are healthcare accessibility and being female, while education (positively) and employment (negatively) have significant relationships with actual use of, but not with intentions to use, PHRs. Future research needs to explicate why the moderating effect revolves around gender.

Personal Health Records Status-Quo and Future Perspectives

2010 ◽  
pp. 43-63
Author(s):  
Simon Y. Liu,
Keyword(s):  
Health Care ◽  
Health Information ◽  
Personal Health Record ◽  
Full Range ◽  
Personal Health Records ◽  
Controlled Vocabulary ◽  
Care Process ◽  
Personal Health ◽  
Health Records ◽  
Access To Health

Consumers, industry, and government have recently focused attention on the potential of personal health records to empower patients in the health care process, improve patient-provider relationships, facilitate patient access to health information, and improve the quality of health care. A Personal Health Record (PHR) is a private and secure digital record that is created, managed, and owned by an individual, and contains the owner’s relevant health information. The benefits of PHRs have not yet been widely realized due to several significant challenges in their adoption, including the need for privacy, security, and interoperability, and the lack of accepted standards. Although many players in the healthcare arena are beginning to offer partial solutions, none have adequately addressed the full range of challenges. The adoption of PHRs can be significantly accelerated by the development of Open Source software that enables an individual to collect, create, organize, and manage his or her own private and secure PHR, using a standardized format and controlled vocabulary.

Personal Health Records Systems Go Mobile

2011 ◽  
pp. 750-772
Author(s):  
Phillip Olla ◽  
Joseph Tan
Keyword(s):  
Health Information ◽  
Mobile Device ◽  
Personal Health Record ◽  
Personal Health Records ◽  
Personal Health ◽  
Health Record ◽  
Health Records ◽  
Extant Literature ◽  
The Past ◽  
Secure Environment

This chapter provides an overview of mobile personal health record (MPHR) systems. A Mobile personal health record is an eclectic application through which patients can access, manage, and share their health information from a mobile device in a private, confidential, and secure environment. Personal health records have evolved over the past three decades from a small card or booklet with immunizations recorded into fully functional mobile accessible portals, and it is the PHR evolution outside of the secure healthcare environment that is causing some concerns regarding privacy. Specifically, the chapter reviews the extant literature on critical evaluative components to be considered when assessing MPHR systems.

Consumer Support for Health Information Exchange and Personal Health Records: A Regional Health Information Organization Survey

2010 ◽  
Vol 36 (3) ◽  
pp. 1043-1052 ◽  
Author(s):  
Vaishali N. Patel ◽  
Rina V. Dhopeshwarkar ◽  
Alison Edwards ◽  
Yolanda Barrón ◽  
Jeffrey Sparenborg ◽  
...  
Keyword(s):  
Health Information ◽  
Information Exchange ◽  
Health Information Exchange ◽  
Personal Health Records ◽  
Information Organization ◽  
Personal Health ◽  
Regional Health ◽  
Health Records

Early Adopters of Apple Health Records at a Large Academic Medical Center: Results of a Cross-Sectional Survey Of Users (Preprint)

2021 ◽  
Author(s):  
Joshua Rolnick ◽  
Robin Ward ◽  
Gordon Tait ◽  
Neha Patel
Keyword(s):  
Health Information ◽  
Private Insurance ◽  
Academic Medical Center ◽  
White Male ◽  
Patient Characteristics ◽  
Personal Health Records ◽  
Ease Of Use ◽  
Personal Health ◽  
Health Records ◽  
Early Adopters

BACKGROUND Mobile applications offer a new approach to personal health records, internet-based tools for patients to consolidate and manage their health information. The University of Pennsylvania Health System (UPHS) was one of the first health systems to participate in Apple Health Records (AHR), a prominent example of this new generation of personal health records. OBJECTIVE To characterize early adoption of Apple Health Records among UPHS patients and understand user perspectives. METHODS An email-based survey with fixed answer, Likert scale, and open-ended questions was administered to all UPHS patients using Apple Health Records in the first 10 months of participation. Survey data linked to the UPHS electronic health record system was used to analyze responses. Multivariable logistic regression modeled the association of patient characteristics with user ratings. Content analysis was used to analyze open-ended questions. RESULTS At the time of the survey 1,458 patients had used AHR at least once. Mean age was 47.5 years, 66.3% were male, 70.9% were white, and 80.8% had private insurance. Response rate was 26%. 46.3% were very satisfied with AHR and 67.7% described it as very easy to use. The most commonly utilized features were lab results (82.9%), clinical vitals (67.5%), and medications (64.7%). No patient characteristics were associated with reporting high satisfaction or ease of use. Most common reason for using AHR was convenience/ease of use and 55% of users reported allowing no other apps to access their health information, citing privacy as one consideration. CONCLUSIONS Early adopters of Apple Health Records were demographically white, male, and privately insured. Convenience was an important facilitator and users were selective in which apps they allowed to access their health information.

scholarly journals Developing a Transnational Health Record Framework with Level-Specific Interoperability Guidelines Based on a Related Literature Review

Healthcare ◽  
2021 ◽  
Vol 9 (1) ◽  
pp. 67
Author(s):  
Ah Ra Lee ◽  
Il Kon Kim ◽  
Eunjoo Lee
Keyword(s):  
Health Information ◽  
Information Technologies ◽  
Business Processes ◽  
Personal Health Records ◽  
Personal Health ◽  
Health Record ◽  
Record System ◽  
Health Records ◽  
Related Literature ◽  
Health Information Interoperability

With the advent of digital healthcare without borders, enormous amounts of health information are captured and computerized. As healthcare quality largely depends on the reliability of given health information, personal health records should be accessible according to patients’ mobility, even as they travel or migrate to other countries. However, since all the health information is scattered in multiple places, it is an onerous task to carry it whenever people move to other countries. To effectively and efficiently utilize health information, interoperability, which is the ability of various healthcare information technologies to exchange, to interpret, and to use data, is needed. Hence, building a robust transnational health information infrastructure with clear interoperability guidelines considering heterogeneous aspects is necessary. For this purpose, this study proposes a Transnational Health Record framework, which enables access to personal health records anywhere. We review related literature and define level-specific interoperability guidelines, business processes, and requirements for the Transnational Health Record system framework.

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