scholarly journals Early experiences with patient generated health data: health system and patient perspectives

2019 ◽  
Vol 26 (10) ◽  
pp. 952-959 ◽  
Author(s):  
Julia Adler-Milstein ◽  
Paige Nong
Keyword(s):  
Health System ◽  
Health Systems ◽  
Patient Preferences ◽  
Data Security ◽  
Health Data ◽  
Health History ◽  
Early Experiences ◽  
Patient Health Status ◽  
Patient Health ◽  
System Approaches

Abstract Objective Although patient generated health data (PGHD) has stimulated excitement about its potential to increase patient engagement and to offer clinicians new insights into patient health status, we know little about these efforts at scale and whether they align with patient preferences. This study sought to characterize provider-led PGHD approaches, assess whether they aligned with patient preferences, and identify challenges to scale and impact. Materials and Methods We interviewed leaders from a geographically diverse set of health systems (n = 6), leaders from large electronic health record vendors (n = 3), and leaders from vendors providing PGHD solutions to health systems (n = 3). Next, we interviewed patients with 1 or more chronic conditions (n = 10), half of whom had PGHD experience. We conducted content analysis to characterize health system PGHD approaches, assess alignment with patient preferences, and identify challenges. Results In this study, 3 primary approaches were identified, and each was designed to support collection of a different type of PGHD: 1) health history, 2) validated questionnaires and surveys, and 3) biometric and health activity. Whereas patient preferences aligned with health system approaches, patients raised concerns about data security and the value of reporting. Health systems cited challenges related to lack of reimbursement, data quality, and clinical usefulness of PGHD. Discussion Despite a federal policy focus on PGHD, it is not yet being pursued at scale. Whereas many barriers contribute to this narrow pursuit, uncertainty around the value of PGHD, from both patients and providers, is a primary inhibitor. Conclusion Our results reveal a fairly narrow set of approaches to PGHD currently pursued by health systems at scale.

scholarly journals Protecting health privacy even when privacy is lost

2019 ◽  
Vol 46 (11) ◽  
pp. 768-772 ◽  
Author(s):  
T J Kasperbauer
Keyword(s):  
Health System ◽  
Precision Medicine ◽  
Health Information ◽  
Health Systems ◽  
Personal Information ◽  
Health Data ◽  
Protect Health Information ◽  
Alternative Strategies ◽  
Data Intensive ◽  
Significant Control

The standard approach to protecting privacy in healthcare aims to control access to personal information. We cannot regain control of information after it has been shared, so we must restrict access from the start. This ‘control’ conception of privacy conflicts with data-intensive initiatives like precision medicine and learning health systems, as they require patients to give up significant control of their information. Without adequate alternatives to the control-based approach, such data-intensive programmes appear to require a loss of privacy. This paper argues that the control view of privacy is shortsighted and overlooks important ways to protect health information even when widely shared. To prepare for a world where we no longer control our data, we must pursue three alternative strategies: obfuscate health data, penalise the misuse of health data and improve transparency around who shares our data and for what purposes. Prioritising these strategies is necessary when health data are widely shared both within and outside of the health system.

scholarly journals Combining Health Data Uses to Ignite Health System Learning

2015 ◽  
Vol 54 (06) ◽  
pp. 479-487 ◽  
Author(s):  
I. Buchan ◽  
J. Ainsworth
Keyword(s):  
Health System ◽  
Health Systems ◽  
Health Informatics ◽  
Information Quality ◽  
Data Extraction ◽  
Critical Mass ◽  
Health Data ◽  
Data Sources ◽  
Research Network ◽  
Contextual Knowledge

SummaryObjectives: In this paper we aim to characterise the critical mass of linked data, methods and expertise required for health systems to adapt to the needs of the populations they serve – more recently known as learning health systems. The objectives are to: 1) identify opportunities to combine separate uses of common data sources in order to reduce duplication of data processing and improve information quality; 2) identify challenges in scaling-up the reuse of health data sufficiently to support health system learning.Methods: The challenges and opportunities were identified through a series of e-health stakeholder consultations and workshops in Northern England from 2011 to 2014. From 2013 the concepts presented here have been refined through feedback to collaborators, including patient/citizen representatives, in a regional health informatics research network (www.herc.ac.uk).Results: Health systems typically have separate information pipelines for: 1) commissioning services; 2) auditing service performance; 3) managing finances; 4) monitoring public health; and 5) research. These pipelines share common data sources but usually duplicate data extraction, aggregation, cleaning/preparation and analytics. Suboptimal analyses may be performed due to a lack of expertise, which may exist elsewhere in the health system but is fully committed to a different pipeline. Contextual knowledge that is essential for proper data analysis and interpretation may be needed in one pipeline but accessible only in another. The lack of capable health and care intelligence systems for populations can be attributed to a legacy of three flawed assumptions: 1) universality: the generalizability of evidence across populations; 2) time-invariance: the stability of evidence over time; and 3) reducibility: the reduction of evidence into specialised subsystems that may be recombined.Conclusions: We conceptualize a population health and care intelligence system capable of supporting health system learning and we put forward a set of maturity tests of progress toward such a system. A factor common to each test is data-action latency; a mature system spawns timely actions proportionate to the information that can be derived from the data, and in doing so creates meaningful measurement about system learning. We illustrate, using future scenarios, some major opportunities to improve health systems by exchanging conventional intelligence pipelines for networked critical masses of data, methods and expertise that minimise data-action latency and ignite system-learning.

scholarly journals Application of Blockchain Technology in Smart Contracts: A Systematic Literature Review

2020 ◽  
Vol 2 (2) ◽  
pp. 160-166
Author(s):  
Zaleha Fauziah ◽  
Haznah Latifah ◽  
Xavier Omar ◽  
Alfiah Khoirunisa ◽  
Shofiyul Millah
Keyword(s):  
Data Security ◽  
Financial Services ◽  
Computer Network ◽  
New Technology ◽  
Smart Contracts ◽  
Program Code ◽  
Health History ◽  
Blockchain Technology ◽  
Transaction Process ◽  
Patient Health

Associated with the current development of the emergence of many technologies that have increased in the world, especially in industry, one of which is the blockchain which is a new technology that is undergoing drastic density, this technology has data that is difficult to manipulate so that the blockchain has data security very trusted, and every record of all the contents of the transaction data can be known from one server to another server so that both parties know each other what the activities are carried out. The recording of transactions in this blockchain technology is connected in one block that is secured directly by a computer network, the blockchain itself has several applications such as Cryptocurrency or can also be called digital currencies, and Smart Contracts. This Smart Contracts is an application owned by blockchain technology that carries out an agreement or digital agreement in the computer program code that is entrusted by both parties stored in the blockchain database, so that it cannot be changed by anyone or the help of other parties, then no longer needed entities that can be trusted in using Smart Contracts. These Smart Contracts help to process the exchange of money, shares and property. Currently there are many industries that use Smart Contracts, such as the business industry that records financial services, the health industry which records data on patient health history, even the insurance and government industries also use Smart Contracts, therefore the existence of Smart Contracts is useful to avoid an intermediary service so that a transaction process will be trtransparent.

(Preprint)

2018 ◽  
Author(s):  
Ram Dixit ◽  
Sahiti Myneni
Keyword(s):  
Cancer Survivors ◽  
Mental Models ◽  
Health Systems ◽  
Information Needs ◽  
Health Data ◽  
Information Architecture ◽  
Personal Health ◽  
User Centered Design ◽  
Card Sort ◽  
Connected Health

BACKGROUND Connected Health technologies are a promising solution for chronic disease management. However, the scope of connected health systems makes it difficult to employ user-centered design in their development, and poorly designed systems can compound the challenges of information management in chronic care. The Digilego Framework addresses this problem with informatics methods that complement quantitative and qualitative methods in system design, development, and architecture. OBJECTIVE To determine the accuracy and validity of the Digilego information architecture of personal health data in meeting cancer survivors’ information needs. METHODS We conducted a card sort study with 9 cancer survivors (patients and caregivers) to analyze correspondence between the Digilego information architecture and cancer survivors’ mental models. We also analyzed participants’ card sort groups qualitatively to understand their conceptual relations. RESULTS We observed significant correlation between the Digilego information architecture and cancer survivors’ mental models of personal health data. Heuristic analysis of groups also indicated informative discordances and the need for patient-centric categories relating health tracking and social support in the information architecture. CONCLUSIONS Our pilot study shows that the Digilego Framework can capture cancer survivors’ information needs accurately; we also recognize the need for larger studies to conclusively validate Digilego information architectures. More broadly, our results highlight the importance of complementing traditional user-centered design methods and innovative informatics methods to create patient-centered connected health systems.

scholarly journals OP0257-PARE USING PATIENT HEALTH LITERACY PROFILES TO IDENTIFY SOLUTIONS TO CHALLENGES FACED IN RHEUMATOLOGY CARE

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 162.2-162
Author(s):  
M. Bakker ◽  
P. Putrik ◽  
J. Rademakers ◽  
M. Van de Laar ◽  
H. Vonkeman ◽  
...  
Keyword(s):  
Health Literacy ◽  
The Netherlands ◽  
Health System ◽  
Demographic Data ◽  
Family Doctor ◽  
List Type ◽  
Research Support ◽  
Score Distribution ◽  
Patient Health ◽  
Literacy Profiles

Background:The prevalence of limited health literacy (i.e. cognitive and social resources of individuals to access, understand and apply health information to promote and maintain good health) in the Netherlands is estimated to be over 36% [1]. Access to and outcomes of rheumatological care may be compromised by limited patient health literacy, yet little is known about how to address this, thus action is required. As influencing individual patients’ health literacy in the rheumatology context is often unrealistic, it is paramount for the health system to be tailored to the health literacy needs of its patients. The OPtimising HEalth LIteracy and Access (Ophelia) process offers a method to inform system change [2].Objectives:Following the Ophelia approach:a. Identify health literacy profiles reflecting strengths and weaknesses of outpatients with RA, SpA and gout.b. Use the health literacy profiles to facilitate discussions on challenges for patients and professionals in rheumatological care and identify possible solutions the health system could offer to address these challenges.Methods:Patients with RA, SpA and gout attending outpatient clinics in three centres in the Netherlands completed the Health Literacy Questionnaire (HLQ) and questions on socio-demographic and health-related characteristics. Hierarchical cluster analysis using Ward’s method identified clusters based on the nine HLQ domains. Three researchers jointly examined 24 cluster solutions for meaningfulness by interpreting HLQ domain scores and patient characteristics. Meaningful clusters were translated into health literacy profiles using HLQ patterns and demographic data. A patient research partner confirmed the identified profiles. Patient vignettes were designed by combining cluster analyses results with qualitative patient interviews. The vignettes were used in two two-hour co-design workshops with rheumatologists and nurses to discuss their perspective on health literacy-related challenges for patients and professionals, and generate ideas on how to address these challenges.Results:In total, 895 patients participated: 49% female, mean age 61 years (±13.0), 25% lived alone, 18% had a migrant background, 6.6% did not speak Dutch at home and 51% had low levels of education. Figure 1 shows a heat map of identified health literacy profiles, displaying the score distribution per profile across nine health literacy domains. Figure 2 shows an excerpt of a patient vignette, describing challenges for a patient with profile number 9. The workshops were attended by 7 and 14 nurses and rheumatologists. Proposed solutions included health literacy communication training for professionals, developing and improving (visual) patient information materials, peer support for patients through patient associations or group consultations, a clear referral system for patients who need additional guidance by a nurse, social worker, lifestyle coach, pharmacist or family doctor, and more time with rheumatology nurses for target populations. Moreover, several system adaptations to the clinic, such as a central desk for all patient appointments, were proposed.Conclusion:This study identified several distinct health literacy profiles of patients with rheumatic conditions. Engaging with health professionals in co-design workshops led to numerous bottom-up ideas to improve care. Next steps include co-design workshops with patients, followed by prioritising and testing proposed interventions.References:[1]Heijmans M. et al. Health Literacy in the Netherlands. Utrecht: Nivel 2018[2]Batterham R. et al. BMC Public Health 2014, 14:694Disclosure of Interests:Mark Bakker: None declared, Polina Putrik: None declared, Jany Rademakers Speakers bureau: In March 2017, Prof. Dr. Rademakers was invited to speak about health literacy at the “Heuvellanddagen” Conference, hosted by Janssen-Cilag., Mart van de Laar Consultant of: Sanofi Genzyme, Speakers bureau: Sanofi Genzyme, Harald Vonkeman: None declared, Marc R Kok Grant/research support from: BMS and Novartis, Consultant of: Novartis and Galapagos, Hanneke Voorneveld: None declared, Sofia Ramiro Grant/research support from: MSD, Consultant of: Abbvie, Lilly, Novartis, Sanofi Genzyme, Speakers bureau: Lilly, MSD, Novartis, Maarten de Wit Grant/research support from: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Consultant of: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Speakers bureau: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Richard Osborne Consultant of: Prof. Osborne is a paid consultant for pharma in the field of influenza and related infectious diseases., Roy Batterham: None declared, Rachelle Buchbinder: None declared, Annelies Boonen Grant/research support from: AbbVie, Consultant of: Galapagos, Lilly (all paid to the department)

scholarly journals Citizens, Research Ethics Committee Members and Researchers’ Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems

2021 ◽  
pp. 155626462199221
Author(s):  
Annabelle Cumyn ◽  
Roxanne Dault ◽  
Adrien Barton ◽  
Anne-Marie Cloutier ◽  
Jean-François Ethier
Keyword(s):  
Research Ethics ◽  
Health Systems ◽  
Ethics Committee ◽  
Health Data ◽  
Data Reuse ◽  
Fundamental Importance ◽  
Research Ethics Committee ◽  
Secondary Use ◽  
Public Perspectives ◽  
Advance Knowledge

A survey was conducted to assess citizens, research ethics committee members, and researchers’ attitude toward information and consent for the secondary use of health data for research within learning health systems (LHSs). Results show that the reuse of health data for research to advance knowledge and improve care is valued by all parties; consent regarding health data reuse for research has fundamental importance particularly to citizens; and all respondents deemed important the existence of a secure website to support the information and consent processes. This survey was part of a larger project that aims at exploring public perspectives on alternate approaches to the current consent models for health data reuse to take into consideration the unique features of LHSs. The revised model will need to ensure that citizens are given the opportunity to be better informed about upcoming research and have their say, when possible, in the use of their data.

scholarly journals The impact of economic sanctions on health and health systems in low- and middle-income countries

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
M Suhrcke ◽  
M Pinna Pintor ◽  
C Hamelmann
Keyword(s):  
Health Outcomes ◽  
Health System ◽  
Health Systems ◽  
Grey Literature ◽  
Economic Sanctions ◽  
Political Crisis ◽  
Middle Income ◽  
Financial Flows ◽  
Adverse Health ◽  
The Impact

Abstract Background Economic sanctions, understood as measures taken by one state or a group of states to coerce another into a desired conduct (eg by restricting trade and financial flows) do not primarily seek to adversely affect the health or health system of the target country's population. Yet, there may be indirect or unintended health and health system consequences that ought to be borne in mind when assessing the full set of effects of sanctions. We take stock of the evidence to date in terms of whether - and if so, how - economic sanctions impact health and health systems in LMICs. Methods We undertook a structured literature review (using MEDLINE and Google Scholar), covering the peer-reviewed and grey literature published from 1970-2019, with a specific focus on quantitative assessments. Results Most studies (23/27) that met our inclusion criteria focus on the relationship between sanctions and health outcomes, ranging from infant or child mortality as the most frequent case over viral hepatitis to diabetes and HIV, among others. Fewer studies (9/27) examined health system related indicators, either as a sole focus or jointly with health outcomes. A minority of studies explicitly addressed some of the methodological challenges, incl. control for relevant confounders and the endogeneity of sanctions. Taking the results at face value, the evidence is almost unanimous in highlighting the adverse health and health system effects of economic sanctions. Conclusions Quantitatively assessing the impact of economic sanctions on health or health systems is a challenging task, not least as it is persistently difficult to disentangle the effect of sanctions from many other, potentially major factors at work that matter for health (as, for instance, war). In addition, in times of severe economic and political crisis (which often coincide with sanctions), the collection of accurate and comprehensive data that could allow appropriate measurement is typically not a priority. Key messages The existing evidence is almost unanimous in highlighting the adverse health and health system effects of economic sanctions. There is preciously little good quality evidence on the health (system) impact of economic sanctions.

scholarly journals Special Issue on Computational Intelligence for Healthcare

Electronics ◽  
2021 ◽  
Vol 10 (15) ◽  
pp. 1841
Author(s):  
Gabriella Casalino ◽  
Giovanna Castellano
Keyword(s):  
Computational Intelligence ◽  
Health Data ◽  
Special Issue ◽  
Patient Health

The number of patient health data has been estimated to have reached 2314 exabytes by 2020 [...]

scholarly journals 22.F. Workshop: What makes for resilient health systems? Evidence from the State of Health in the EU country profiles

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
◽  
Keyword(s):  
Health System ◽  
Health Systems ◽  
Building Blocks ◽  
The State ◽  
Lessons Learned ◽  
Three Dimensions ◽  
Health System Strengthening ◽  
New Work ◽  
State Of Health ◽  
The Eu

Abstract The European Commission's State of Health in the EU (SoHEU) initiative aims to provide factual, comparative data and insights into health and health systems in EU countries. The resulting Country Health Profiles, published every two years (current editions: November 2019) are the joint work of the European Observatory on Health Systems and Policies and the OECD, in cooperation with the European Commission. They are designed to support the efforts of Member States in their evidence-based policy making and to contribute to health care systems' strengthening. In addition to short syntheses of population health status, determinants of health and the organisation of the health system, the Country Profiles provide an assessment of the health system, looking at its effectiveness, accessibility and resilience. The idea of resilient health systems has been gaining traction among policy makers. The framework developed for the Country Profiles template sets out three dimensions and associated policy strategies and indicators as building blocks for assessing resilience. The framework adopts a broader definition of resilience, covering the ability to respond to extreme shocks as well as measures to address more predictable and chronic health system strains, such as population ageing or multimorbidity. However, the current framework predates the onset of the novel coronavirus pandemic as well as new work on resilience being done by the SoHEU project partners. This workshop aims to present resilience-enhancing strategies and challenges to a wide audience and to explore how using the evidence from the Country Profiles can contribute to strengthening health systems and improving their performance. A brief introduction on the SoHEU initiative will be followed by the main presentation on the analytical framework on resilience used for the Country Profiles. Along with country examples, we will present the wider results of an audit of the most common health system resilience strategies and challenges emerging from the 30 Country Profiles in 2019. A roundtable discussion will follow, incorporating audience contributions online. The Panel will discuss the results on resilience actions from the 2019 Country Profiles evidence, including: Why is resilience important as a practical objective and how is it related to health system strengthening and performance? How can countries use their resilience-related findings to steer national reform efforts? In addition, panellists will outline how lessons learned from country responses to the Covid-19 pandemic and new work on resilience by the Observatory (resilience policy briefs), OECD (2020 Health at a Glance) and the EC (Expert Group on Health Systems Performance Assessment (HSPA) Report on Resilience) can feed in and improve the resilience framework that will be used in the 2021 Country Profiles. Key messages Knowing what makes health systems resilient can improve their performance and ability to meet the current and future needs of their populations. The State of Health in the EU country profiles generate EU-wide evidence on the common resilience challenges facing countries’ health systems and the strategies being employed to address them.

scholarly journals How Public Trust in Health Care Can Shape Patient Overconsumption in Health Systems? The Missing Links

2021 ◽  
Vol 18 (8) ◽  
pp. 3860
Author(s):  
Katarzyna Krot ◽  
Iga Rudawska
Keyword(s):  
Health Care ◽  
Patient Satisfaction ◽  
Health System ◽  
Health Systems ◽  
Quantitative Research ◽  
Public Trust ◽  
Complex Problem ◽  
Health Care Consumption ◽  
Mediating Role ◽  
Countries In Transition

Overconsumption of health care is an ever-present and complex problem in health systems. It is especially significant in countries in transition that assign relatively small budgets to health care. In these circumstances, trust in the health system and its institutions is of utmost importance. Many researchers have studied interpersonal trust. Relatively less attention, however, has been paid to public trust in health systems and its impact on overconsumption. Therefore, this paper seeks to identify and examine the link between public trust and the moral hazard experienced by the patient with regard to health care consumption. Moreover, it explores the mediating role of patient satisfaction and patient non-adherence. For these purposes, quantitative research was conducted based on a representative sample of patients in Poland. Interesting findings were made on the issues examined. Patients were shown not to overconsume health care if they trusted the system and were satisfied with their doctor-patient relationship. On the other hand, nonadherence to medical recommendations was shown to increase overuse of medical services. The present study contributes to the existing knowledge by identifying phenomena on the macro (public trust in health care) and micro (patient satisfaction and non-adherence) scales that modify patient behavior with regard to health care consumption. Our results also provide valuable knowledge for health system policymakers. They can be of benefit in developing communication plans at different levels of local government.

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