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.

Return of Results in Participant-Driven Research: Learning from Transformative Research Models.

Participant-driven research (PDR) is a burgeoning domain of research innovation, often facilitated by mobile technologies (mHealth). Return of results and data are common hallmarks, grounded in transparency and data democracy. PDR has much to teach traditional research about these practices and successful engagement. Recommendations calling for new state laws governing research with mHealth modalities common in PDR and federal creation of review mechanisms, threaten to stifle valuable participant-driven innovation, including in return of results.

OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians' Outpatient Visit Notes.

BACKGROUND: Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices. OBJECTIVE: The aim of this study was to examine the ongoing experiences and perceptions of patients who read ambulatory visit notes written by a broad range of doctors, nurses, and other clinicians. METHODS: A total of 3 large US health systems in Boston, Seattle, and rural Pennsylvania conducted a Web-based survey of adult patients who used portal accounts and had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient-reported behaviors and their perceptions concerning benefits versus risks. RESULTS: Among 136,815 patients who received invitations, 21.68% (29,656/136,815) responded. Of the 28,782 patient respondents, 62.82% (18,081/28,782) were female, 72.90% (20,982/28,782) were aged 45 years or older, 76.94% (22,146/28,782) were white, and 14.30% (4115/28,782) reported fair or poor health. Among the 22,947 who reported reading 1 or more notes, 3 out of 4 reported reading them for 1 year or longer, half reported reading at least 4 notes, and 37.74% (8588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16,354/22,520, 72.62%), feeling in control of their care (15,726/22,515, 69.85%), and remembering the plan of care (14,821/22,516, 65.82%). Few were very confused (737/22,304, 3.3%) or more worried (1078/22,303, 4.83%) after reading notes. About a third reported being encouraged by their clinicians to read notes and a third told their clinicians they had read them. Less educated, nonwhite, older, and Hispanic patients, and individuals who usually did not speak English at home, were those most likely to report major benefits from note reading. Nearly all respondents (22,593/22,947, 98.46%) thought Web-based access to visit notes a good idea, and 62.38% (13,427/21,525) rated this practice as very important for choosing a future provider. CONCLUSIONS: In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit. However, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the United States and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks.

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.

A Global Analysis of Approaches to Sharing Clinical Data with Patients.

Engaging patients in their care has become a topic of increasing importance, and enabling patients to have access to their clinical data is a key aspect of such engagement. To investigate on an international scale the current state of approaches for providing patients with access to their own clinical information, individuals from 16 countries, across six continents, participated in cross-sectional semi-structured interviews. Interview questions focused on social and cultural influences that affected patient engagement activities, government support for current and planned initiatives, data ownership models, and technical issues. Substantive initiatives for providing information to patients in the majority of countries interviewed are present; however, these initiatives were diverse in nature and stage of implementation. Efforts to improve patient access to data are active on a global-scale. There are many open questions about best practices and much can be learned by adopting an international perspective to guide future implementation efforts.

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.

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.

Understanding the gap between desire for and use of consumer health solutions.

Modern healthcare is more complex than ever before, with a broader range of care providers, organizations, diagnostic approaches and treatments. The result is that accurate and timely information is more important than ever. In response, clinical use of health information technology has grown significantly in recent years and there is growing interest in the use of consumer health solutions. In this article, the authors discuss the current landscape of the latter in Canada, enablers and barriers to their adoption and our readiness for change.

Reorienting health systems to meet the demand for consumer health solutions.

There is a clear and pronounced gap between the demand for and access to consumer health solutions. Existing health information systems and broader health system factors such as funding models are reasons for this gap. There are strong arguments from the perspectives of the consumer and population health for closing this gap, but the case from the perspective of the current health system is mixed. Closing the gap will require a concerted effort to reorient health information systems and funding models to support online access by consumers to health information and health services.

The consumer health gap: are we innovating for the future or simply addressing the past?

The pace of adoption of consumer health solutions appears to be slow, despite some documented success. Reasons why the health system is not embracing this success are complex but not entirely unexpected. The barriers continue to be more a reflection of the state of our health system itself than of the patients who are demanding more involvement in the management of their care. The solution may lie in our willingness to be bolder in our vision for our future health system: for consumer health solutions to drive our focus on the management of chronic illness and self-care. The investments we make will require a measured prioritizing of the patient over the provider in building the health information technology systems of tomorrow.