Patient Access to Mental Health Notes: Motivating Evidence-Informed Ethical Guidelines.

ABSTRACT: In the last decade, many health organizations have embarked on a revolution in clinical communication. Using electronic devices, patients can now gain rapid access to their online clinical records. Legally, patients in many countries already have the right to obtain copies of their health records; however, the practice known as "open notes" is different. Via secure online health portals, patients are now able to access their test results, lists of medications, and the very words that clinicians write about them. Open notes are growing with most patients in the Nordic countries already offered access to their full electronic record. From April 2021, a new federal ruling in the United States mandates-with few exemptions-that providers offer patients access to their online notes (Office of the National Coordinator for Health Information Technology, Department of Health and Human Services, Available at: https://www.govinfo.gov/content/pkg/FR-2019-03-04/pdf/2019-02224.pdf#page=99). Against these policy changes, only limited attention has been paid to the ethical question about whether patients with mental health conditions should access their notes, as mentioned in the articles by Strudwick, Yeung, and Gratzer (Front Psychiatry 10:917, 2019) and Blease, O'Neill, Walker, Hägglund, and Torous (Lancet Psychiatry 7:924-925, 2020). In this article, our goal is to motivate further inquiry into opening mental health notes to patients, particularly among persons with serious mental illness and those accessing psychological treatments. Using biomedical ethical principles to frame our discussion, we identify key empirical questions that must be pursued to inform ethical practice guidelines.

Improving the impact of clinical documentation through patient-driven co-design: experiences with cancer pathology reports.

OBJECTIVE: With the unprecedented rise of patient access to clinical documentation through electronic health records, there is a need for health systems to understand best practices for redesigning clinical documentation to support patient needs. This study used an experience-based co-design approach to inform the redesign of cancer pathology reports to improve their patient-centeredness and impact on patient engagement. MATERIALS AND METHODS: Multiple methods for data collection and stakeholder engagement were used, including Delphi prioritisation with breast and colorectal cancer experts (n=78) and focus groups with patients with cancer (n=23) in the Seattle area. Iterative rounds of consensus generation and reflection were used to elicit themes and design recommendations for the development of patient-centred pathology reports on cancer care. RESULTS: Although each cancer type had nuanced elements to consider, common design requirements emerged around two key themes: (1) clinical documentation language should be framed in a way that informs and engages patients, and (2) clinical documentation format should be leveraged to enhance readability and information flow. Study activities illuminated detailed recommendations to improve the patient-centeredness of pathology reports based on patients' and clinicians' lived experience. DISCUSSION: The design requirements that emerged from this study provide a framework that can guide the rapid development of patient-centred pathology reports for all cancer types. Even further, health systems can replicate these methods to guide experience-based co-design of clinical documentation for contexts beyond cancer care. CONCLUSION: This work offers practice-based learnings that can more effectively guide health systems in their clinical documentation redesign efforts.

How GDPR Enhances Transparency and Fosters Pseudonymisation in Academic Medical Research.

The European General Data Protection Regulation (GDPR) has dotted the i's and crossed the t's in the context of academic medical research. One year into GDPR, it is clear that a change of mind and the uptake of new procedures is required. Research organisations have been looking at the possibility to establish a code-of-conduct, good practices and/or guidelines for researchers that translate GDPR's abstract principles to concrete measures suitable for implementation. We introduce a proposal for the implementation of GDPR in the context of academic research which involves the processing of health related data, as developed by a multidisciplinary team at the University Hospitals Leuven. The proposal is based on three elements, three stages and six specific safeguards. Transparency and pseudonymisation are considered key to find a balance between the need for researchers to collect and analyse personal data and the increasing wish of data subjects for informational control.

Inpatients Sign On: An Opportunity to Engage Hospitalized Patients and Caregivers Using Inpatient Portals.

BACKGROUND: Inpatient portals are online patient portals linked to electronic health records that provide hospitalized patients and caregivers secure access to real-time clinical information and tools to enhance their communication with providers and hospital experience. OBJECTIVE: The main objective of this commentary was to provide a perspective that inpatient portals are innovative tools poised to engage patients and caregivers during hospitalization and, thus, enhance patient-centered care. RESULTS: Inpatient portals are desired by patients and caregivers and may contribute to improved recognition of their inpatient care team, knowledge of their treatment plan and overall inpatient experience. A sociotechnical systems approach is recommended to mitigate potential unintended consequences of inpatient portal use and support effective portal design, implementation and evaluation. CONCLUSIONS: This article highlights the potential of using inpatient portals to engage hospitalized patients and caregivers and proposes next steps to evaluate this emerging technology.

[Value of shared electronic health records for the management of homeless people]. / Prise en charge des personnes sans chez-soi : intérêt du dossier médical partagé ?

AIM: To assess the acceptability for GPS to use the French shared Electronic Health Record (Dossier Médical Partagé, "DMP") when caring for Homeless People (HP). METHODS: Mixed, sequential, qualitative-quantitative study. The qualitative phase consisted of semi-structured interviews with GPs involved in the care of HP. During the quantitative phase, questionnaires were sent to 150 randomized GPs providing routine healthcare in Marseille. Social and practical acceptability was studied by means of a Likert Scale. RESULTS: 19 GPs were interviewed during the qualitative phase, and 105 GPs answered the questionnaire during the quantitative phase (response rate: 73%). GPs had a poor knowledge about DMP. More than half (52.5%) of GPs were likely to effectively use DMP for HP. GPs felt that the "DMP" could improve continuity, quality, and security of care for HP. They perceived greater benefits of the use the DMP for HP than for the general population, notably in terms of saving time (p = 0.03). However, GPs felt that HP were vulnerable and wanted to protect their patients; they worried about security of data storage. GPs identified specific barriers for HP to use DMP: most of them concerned practical access for HP to DMP (lack of social security card, or lack of tool for accessing internet). CONCLUSION: A shared electronic health record, such as the French DMP, could improve continuity of care for HP in France. GPs need to be better informed, and DMP functions need to be optimized and adapted to HP, so that it can be effectively used by GPs for HP.

Assessment of US Hospital Compliance With Regulations for Patients' Requests for Medical Records.

Importance: Although federal law has long promoted patients' access to their protected health information, this access remains limited. Previous studies have demonstrated some issues in requesting release of medical records, but, to date, there has been no comprehensive review of the challenges that exist in all aspects of the request process. Objective: To evaluate the current state of medical records request processes of US hospitals in terms of compliance with federal and state regulations and ease of patient access. Design, Setting, and Participants: A cross-sectional study of medical records request processes was conducted between August 1 and December 7, 2017, in 83 top-ranked US hospitals with independent medical records request processes and medical records departments reachable by telephone. Hospitals were ranked as the top 20 hospitals for each of the 16 adult specialties in the 2016-2017 US News & World Report Best Hospitals National Rankings. Exposures: Scripted interview with medical records departments in a single-blind, simulated patient experience. Main Outcomes and Measures: Requestable information (entire medical record, laboratory test results, medical history and results of physical examination, discharge summaries, consultation reports, physician orders, and other), formats of release (pick up in person, mail, fax, email, CD, and online patient portal), costs, and request processing times, identified on medical records release authorization forms and through telephone calls with medical records departments. Results: Among the 83 top-ranked US hospitals representing 29 states, there was discordance between information provided on authorization forms and that obtained from the simulated patient telephone calls in terms of requestable information, formats of release, and costs. On the forms, as few as 9 hospitals (11%) provided the option of selecting 1 of the categories of information and only 44 hospitals (53%) provided patients the option to acquire the entire medical record. On telephone calls, all 83 hospitals stated that they were able to release entire medical records to patients. There were discrepancies in information given in telephone calls vs on the forms between the formats hospitals stated that they could use to release information (69 [83%] vs 40 [48%] for pick up in person, 20 [24%] vs 14 [17%] for fax, 39 [47%] vs 27 [33%] for email, 55 [66%] vs 35 [42%] for CD, and 21 [25%] vs 33 [40%] for online patient portals), additionally demonstrating noncompliance with federal regulations in refusing to provide records in the format requested by the patient. There were 48 hospitals that had costs of release (as much as $541.50 for a 200-page record) above the federal recommendation of $6.50 for electronically maintained records. At least 6 of the hospitals (7%) were noncompliant with state requirements for processing times. Conclusions and Relevance: The study revealed that there are discrepancies in the information provided to patients regarding the medical records release processes and noncompliance with federal and state regulations and recommendations. Policies focused on improving patient access may require stricter enforcement to ensure more transparent and less burdensome medical records request processes for patients.

Cancer patients' attitudes and experiences of online access to their electronic medical records: A qualitative study.

Patients' access to their online medical records serves as one of the cornerstones in the efforts to increase patient engagement and improve healthcare outcomes. The aim of this article is to provide in-depth understanding of cancer patients' attitudes and experiences of online medical records, as well as an increased understanding of the complexities of developing and launching e-Health services. The study result confirms that online access can help patients prepare for doctor visits and to understand their medical issues. In contrast to the fears of many physicians, the study shows that online access to medical records did not generate substantial anxiety, concerns or increased phone calls to the hospital.

What Patients Value About Reading Visit Notes: A Qualitative Inquiry of Patient Experiences With Their Health Information.

BACKGROUND: Patients are increasingly asking for their health data. Yet, little is known about what motivates patients to engage with the electronic health record (EHR). Furthermore, quality-focused mechanisms for patients to comment about their records are lacking. OBJECTIVE: We aimed to learn more about patient experiences with reading and providing feedback on their visit notes. METHODS: We developed a patient feedback tool linked to OpenNotes as part of a pilot quality improvement initiative focused on patient engagement. Patients who had appointments with members of 2 primary care teams piloting the program between August 2014-2015 were eligible to participate. We asked patients what they liked about reading notes and about using a feedback tool and analyzed all patient reports submitted during the pilot period. Two researchers coded the qualitative responses (κ=.74). RESULTS: Patients and care partners submitted 260 reports. Among these, 98.5% (256/260) of reports indicated that the reporting tool was valuable, and 68.8% (179/260) highlighted what patients liked about reading notes and the OpenNotes patient reporting tool process. We identified 4 themes describing what patients value about note content: confirm and remember next steps, quicker access and results, positive emotions, and sharing information with care partners; and 4 themes about both patients' use of notes and the feedback tool: accuracy and correcting mistakes, partnership and engagement, bidirectional communication and enhanced education, and importance of feedback. CONCLUSIONS: Patients and care partners who read notes and submitted feedback reported greater engagement and the desire to help clinicians improve note accuracy. Aspects of what patients like about using both notes as well as a feedback tool highlight personal, relational, and safety benefits. Future efforts to engage patients through the EHR may be guided by what patients value, offering opportunities to strengthen care partnerships between patients and clinicians.

Increasing Health Portal Utilization in Cardiac Ambulatory Patients: A Pilot Project.

Increasing health portal participation actively engages patients in their care and improves outcomes. The primary aim for this project was to increase patient health portal utilization. Nurses used a tablet-based demo to teach patients how to navigate the health portal. Assigning health videos to the portal was a tactic used to increase utilization. Each patient participant was surveyed about health portal utilization at initial nurse navigator appointment, day of procedure, and 30 days after discharge. Seventy-three percent (n = 14) of the 19 selected patients received the intervention; 36% (n = 4) of patients reported using a health portal feature; meaningful use metric preintervention increased from 12% to 16% after the intervention; 16% and 18% of patients viewed assigned videos in their health portal prior to procedure and after hospital discharge. Patients need a reason to access their health portal. Education alone is not enough to motivate patient portal use. Further research is needed to specify what tactics are required to motivate patients to use their health portals.

Patient portals and young people: addressing the privacy dilemma of providing access to health information.

Patient portals enable people to access their health information electronically, but concerns about confidentiality and privacy breaches, particularly for young people, may be impeding portal adoption in New Zealand. This paper considers the legal and ethical framework relating to health information privacy and informed consent in New Zealand, and proposes an approach to implementing patient portals for young people. Shared portal access (where both a young person and their parent or guardian have access to the young person's portal) may be appropriate for young children whose parents or guardians are responsible for their health care. However, as children mature and their capacity to make health care decisions increases, general practitioners will need to consider shifting to independent portal access by competent young people. The circumstances of each young person, including their best interests and rights, cultural needs and their views on information disclosure should be taken into account.

Socioeconomic disparities in adoption of personal health records over time.

OBJECTIVES: Since 2009, federal policies have incentivized medical organizations to provide medical record access to patients. We sought to track personal health record (PHR) adoption and differences by sociodemographic group over time. STUDY DESIGN: Random-digit-dial survey conducted for 4 consecutive years in New York state. METHODS: The Empire State Poll is a random digit-dial survey conducted every year in New York state, with an annual sample size of 800 individuals, weighted to create a representative state sample. We analyzed 4 consecutive years of poll data to examine trends. RESULTS: The proportion of New Yorkers using PHRs rose sharply, from 11% in 2012 to 27% in 2015. By 2015, there were no significant differences in PHR use between blacks and other races, but Hispanics and low-income respondents were less likely to use PHRs. CONCLUSIONS: During a 4-year period in which federal policies incentivized medical organizations to give medical record access to patients through PHRs and electronic portals, rates of PHR use increased rapidly in all sociodemographic groups. However, a digital divide remains evident, linked to Hispanic ethnicity and lower income.

Positive beliefs and privacy concerns shape the future for the Personally Controlled Electronic Health Record.

The uptake of the Personally Controlled Electronic Health Record (PCEHR) has been slowly building momentum in Australia. The purpose of the PCEHR is to collect clinically important information from multiple healthcare providers to provide a secure electronic record to patients and their authorised healthcare providers that will ultimately enhance the efficiency and effectiveness of healthcare delivery. Reasons for the slow uptake of the PCEHR and future directions to improve its usefulness is discussed later.

Cryptanalysis and improvement of an improved two factor authentication protocol for telecare medical information systems.

Telecare medical information systems (TMIS) provides rapid and convenient health care services remotely. Efficient authentication is a prerequisite to guarantee the security and privacy of patients in TMIS. Authentication is used to verify the legality of the patients and TMIS server during remote access. Very recently Islam et al. (J. Med. Syst. 38(10):135, 2014) proposed a two factor authentication protocol for TMIS using elliptic curve cryptography (ECC) to improve Xu et al.'s (J. Med. Syst. 38(1):9994, 2014) protocol. They claimed their improved protocol to be efficient and provides all security requirements. However our analysis reveals that Islam et al.'s protocol suffers from user impersonation and server impersonation attacks. Furthermore we proposed an enhanced protocol. The proposed protocol while delivering all the virtues of Islam et al.'s protocol resists all known attacks.

A novel authentication scheme using self-certified public keys for telecare medical information systems.

Telecare medical information systems (TMIS), with the explosive growth of communication technology and physiological monitoring devices, are applied increasingly to enable and support healthcare delivery services. In order to safeguard patients' privacy and tackle the illegal access, authentication schemes for TMIS have been investigated and designed by many researchers. Many of them are promising for adoption in practice, nevertheless, they still have security flaws. In this paper, we propose a novel remote authentication scheme for TMIS using self-certified public keys, which is formally secure in the ID-mBJM model. Besides, the proposed scheme has better computational efficiency. Compared to the related schemes, our protocol is more practical for telemedicine system.

Robust and efficient biometrics based password authentication scheme for telecare medicine information systems using extended chaotic maps.

The Telecare Medicine Information Systems (TMISs) provide an efficient communicating platform supporting the patients access health-care delivery services via internet or mobile networks. Authentication becomes an essential need when a remote patient logins into the telecare server. Recently, many extended chaotic maps based authentication schemes using smart cards for TMISs have been proposed. Li et al. proposed a secure smart cards based authentication scheme for TMISs using extended chaotic maps based on Lee's and Jiang et al.'s scheme. In this study, we show that Li et al.'s scheme has still some weaknesses such as violation the session key security, vulnerability to user impersonation attack and lack of local verification. To conquer these flaws, we propose a chaotic maps and smart cards based password authentication scheme by applying biometrics technique and hash function operations. Through the informal and formal security analyses, we demonstrate that our scheme is resilient possible known attacks including the attacks found in Li et al.'s scheme. As compared with the previous authentication schemes, the proposed scheme is more secure and efficient and hence more practical for telemedical environments.