Citations

Background: Paclitaxel-treated patients can suffer from years of peripheral neuropathy with pain, numbness, and tingling. Promising preclinical data with poly (ADP-ribose) polymerase (PARP) inhibitors led us to explore this class of agents to palliate this neuropathy. Methods: We relied on a completed trial that tested the antineoplastic effects of veliparib (NCT01012817). Data from patients who had been enrolled on NCT01012817, who previously received paclitaxel, and who had completed a validated pain assessment instrument were evaluated for improvement in their pain scores. Results: All 34 eligible patients were women, and all had a metastatic gynecological malignancy. On a 10-point scale (higher numbers indicative of worse pain), the average baseline score was 3.6 (range: 0-7). Seven patients (21%; 95% confidence interval: 9%-38%) manifested a drop in pain score (1 score lower than baseline followed by at least one consecutive value also below baseline). Of note, no patients initiated other therapy for neuropathy while on NCT01012817. Conclusion: The PARP inhibitors merit further study for chemotherapy-induced peripheral neuropathy. For patients suffering from peripheral neuropathy, these putative palliative effects might prompt earlier consideration of a PARP inhibitor as part of cancer treatment.

Background: To describe the baseline characteristics of patients with heart failure and preserved left ventricular ejection fraction enrolled in the PARAGON-HF trial (Prospective Comparison of Angiotensin Receptor Neprilysin Inhibitor With Angiotensin Receptor Blocker Global Outcomes in HFpEF) comparing sacubitril/valsartan to valsartan in reducing morbidity and mortality. Methods and Results: We report key demographic, clinical, and laboratory findings, and baseline therapies, of 4822 patients randomized in PARAGON-HF, grouped by factors that influence criteria for study inclusion. We further compared baseline characteristics of patients enrolled in PARAGON-HF with those patients enrolled in other recent trials of heart failure with preserved ejection fraction (HFpEF). Among patients enrolled from various regions (16% Asia-Pacific, 37% Central Europe, 7% Latin America, 12% North America, 28% Western Europe), the mean age of patients enrolled in PARAGON-HF was 72.7±8.4 years, 52% of patients were female, and mean left ventricular ejection fraction was 57.5%, similar to other trials of HFpEF. Most patients were in New York Heart Association class II, and 38% had ≥1 hospitalizations for heart failure within the previous 9 months. Diabetes mellitus (43%) and chronic kidney disease (47%) were more prevalent than in previous trials of HFpEF. Many patients were prescribed angiotensin-converting enzyme inhibitors or angiotensin receptor blockers (85%), β-blockers (80%), calcium channel blockers (36%), and mineralocorticoid receptor antagonists (24%). As specified in the protocol, virtually all patients were on diuretics, had elevated plasma concentrations of N-terminal pro-B-type natriuretic peptide (median, 911 pg/mL; interquartile range, 464–1610), and structural heart disease. Conclusions: PARAGON-HF represents a contemporary group of patients with HFpEF with similar age and sex distribution compared with prior HFpEF trials but higher prevalence of comorbidities. These findings provide insights into the impact of inclusion criteria on, and regional variation in, HFpEF patient characteristics. CLINICAL TRIAL REGISTRATION: URL: https://www.clinicaltrials.gov . Unique identifier: NCT01920711.

AbstractHistorically, patients have held a passive role within healthcare, seeking consultation from and following the directions of providers and their care teams. However, changes in culture, education, and technology are making it possible for patients to proactively develop and implement technologies and approaches for health management and quality of life enhancement—to act as patient informaticians. This perspective reviews the societal shifts facilitating the evolution of patient informaticians as discrete actors within healthcare, describes the work of patient informaticians and how this work differs from that of other patient roles (eg, patient advocates), considers examples of patient informaticians in action, and defines patient informaticians’ position relative to the healthcare system.

This study examines the importance of four psychosocial factors—personality, cognitive appraisal of quality of life, social support, and current reserve-building—in predicting treatment burden in chronically ill patients. Chronically ill patients ( n = 446) completed web-based measures. Structural equation modeling was used to investigate psychosocial factors predicting treatment burden. Reserve-building activities indirectly reduced treatment burden by: (1) reducing health worries appraisals, (2) reducing financial difficulties, (3) increasing calm and peaceful appraisals, and (4) increasing perceived social support. These findings point to key behaviors that chronically ill people can use to attenuate their treatment burden.

Objectives: With the increased use of participatory health enabling technologies, such as social media, balancing the need for health information with patient privacy and confidentiality has become a more complex and immediate concern. The purpose of this paper produced by the members of the IMIA Participatory Health and Social Media (PHSM) working group is to investigate patient needs for health information using participatory health enabling technologies, while balancing their needs for privacy and confidentiality. Methods: Six domain areas including media sharing platforms, patient portals, web-based platforms, crowdsourcing websites, medical avatars, and other mobile health technologies were identified by five members of the IMIA PHSM working group as relevant to participatory health and the balance between data sharing and patient needs for privacy and confidentiality. After identifying the relevant domain areas, our scoping review began by searching several databases such as PubMed, MEDLINE, Scopus, and Google Scholar using a variety of key search terms. Results: A total of 1,973 studies were identified, of which 68 studies met our inclusion criteria and were included in the analysis. Results showed that challenges for balancing patient needs for information and privacy and confidentiality concerns included: cross-cultural understanding, clinician and patient awareness, de-identification of data, and commercialization of patient data. Some opportunities identified were patient empowerment, connecting participatory health enabling technologies with clinical records, open data sharing agreement, and e-consent. Conclusion: Balancing between privacy and patient needs for health information in the age of participatory health and social media offers several opportunities and challenges. More people are engaging in actively managing health through participatory health enabling technologies. Such activity often includes sharing health information and with this comes a perennial tension between balancing individual needs and the desire to uphold privacy and confidentiality. We recommend that guidelines for both patients and clinicians, in terms of their use of participatory health-enabling technologies, are developed to ensure that patient privacy and confidentiality are protected, and a maximum benefit can be realized.

SummaryPrivacy is commonly regarded as a regulatory requirement achieved via technical and organizational management practices. Those working in the field of informatics often play a role in privacy preservation as a result of their expertise in information technology, workflow analysis, implementation science, or related skills. Viewing privacy from the perspective of patients whose protected health information is at risk broadens the considerations to include the perceived duality of privacy; the existence of privacy within a context unique to each patient; the competing needs inherent within privacy management; the need for particular consideration when data are shared; and the need for patients to control health information in a global setting. With precision medicine, artificial intelligence, and other treatment innovations on the horizon, health care professionals need to think more broadly about how to preserve privacy in a health care environment driven by data sharing. Patient-reported privacy preferences, privacy portability, and greater transparency around privacy-preserving functionalities are potential strategies for ensuring that privacy regulations are met and privacy is preserved.

Objectives: Connected healthcare is an essential part of patient-centred care delivery. Technology such as telehealth is a critical part of connected healthcare. However, exchanging health information brings the risk of privacy issues. To better manage privacy risks we first need to understand the different patterns of patient-centred care in order to tailor solutions to address privacy risks. Methods: Drawing upon published literature, we develop a business model to enable patient-centred care via telehealth. The model identifies three patient-centred connected health patterns. We then use the patterns to analyse potential privacy risks and possible solutions from different types of telehealth delivery. Results: Connected healthcare raises the risk of unwarranted access to health data and related invasion of privacy. However, the risk and extent of privacy issues differ according to the pattern of patient-centred care delivery and the type of particular challenge as they enable the highest degree of connectivity and thus the greatest potential for privacy breaches. Conclusion: Privacy issues are a major concern in telehealth systems and patients, providers, and administrators need to be aware of these privacy issues and have guidance on how to manage them. This paper integrates patient-centred connected health care, telehealth, and privacy risks to provide an understanding of how risks vary across different patterns of patient-centred connected health and different types of telehealth delivery.