Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology

PURPOSE We sought to generate informed and considered opinions regarding acceptable secondary uses of deidentified health information and consent models for oncology learning health care systems. METHODS Day-long democratic deliberation sessions included 217 patients with cancer at four geographically and sociodemographically diverse sites. Patients completed three surveys (at baseline, immediately after deliberation, and 1-month follow-up). RESULTS Participants were 67.3% female, 21.7% black, and 6.0% Hispanic. The most notable changes in perceptions after deliberation related to use of deidentified medical-record data by insurance companies. After discussion, 72.3% of participants felt comfortable if the purpose was to make sure patients receive recommended care ( v 79.5% at baseline; P = .03); 24.9% felt comfortable if the purpose was to determine eligibility for coverage or reimbursement ( v 50.9% at baseline; P < .001). The most notable change about secondary research use related to believing it was important that doctors ask patients at least once whether researchers can use deidentified medical-records data for future research. The proportion endorsing high importance decreased from baseline (82.2%) to 68.7% immediately after discussion ( P < .001), and remained decreased at 73.1% ( P = .01) at follow-up. At follow-up, non-Hispanic whites were more likely to consider it highly important to be able to conduct medical research with deidentified electronic health records (96.8% v 87.7%; P = .01) and less likely to consider it highly important for doctors to get a patient’s permission each time deidentified medical record information is used for research (23.2% v 51.6%; P < .001). CONCLUSION This research confirms that most patients wish to be asked before deidentified medical records are used for research. Policies designed to realize the potential benefits of learning health care systems can, and should be, grounded in informed and considered public opinion.

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J 5 — A Data Processing System for Medical Information

Methods of Information in Medicine ◽

10.1055/s-0038-1636653 ◽

1967 ◽

Vol 06 (01) ◽

pp. 1-6

Author(s):

P. Hall ◽

Ch. Mellner ◽

T. Danielsson

Keyword(s):

Medical Records ◽

Medical Information ◽

Health Care Systems ◽

Processing System ◽

Linear Pattern ◽

Flexible Form ◽

Care Systems ◽

Pattern Recognition Analysis ◽

Numeric Information

A system for medical information has been developed. The system is a general and flexible one which without reprogramming or new programs can accept any alphabetic and/or numeric information. Coded concepts and natural language can be read, stored, decoded and written out. Medical records or parts of records (diagnosis, operations, therapy, laboratory tests, symptoms etc.) can be retrieved and selected. The system can process simple statistics but even make linear pattern recognition analysis.The system described has been used for in-patients, outpatients and individuals in health examinations.The use of computers in hospitals, health examinations or health care systems is a problem of storing information in a general and flexible form. This problem has been solved, and now it is possible to add new routines like booking and follow-up-systems.

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Institutionalization and Professionalization

10.1093/oxfordhb/9780198705109.013.1 ◽

2016 ◽

Cited By ~ 1

Author(s):

Trish Reay ◽

Elizabeth Goodrick ◽

Bob Hinings

Keyword(s):

Health Care ◽

Organizational Change ◽

Health Care Systems ◽

Future Research ◽

Power Dynamics ◽

Care Systems

Health care systems are both highly institutionalized and highly professionalized. We suggest that both characteristics should be considered to understand the underlying power dynamics and how organizational change can occur. Although these characteristics have mostly been considered separately, we identify three ways they are being brought together and show how each reveals different underlying power dynamics that in turn suggest different explanations of organizational change. To conclude, we set out three avenues for future research that will continue to advance our knowledge of change in health care.

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Organizational Leadership and Health Care Reform

Public Health and Welfare ◽

10.4018/978-1-5225-1674-3.ch048 ◽

2016 ◽

pp. 1043-1063

Author(s):

T. Ray Ruffin ◽

Joyce Marie Hawkins ◽

D. Israel Lee

Keyword(s):

Health Care ◽

Organizational Leadership ◽

Health Care Systems ◽

Future Research ◽

Health Care Reforms ◽

Use Of Technology ◽

Hitech Act ◽

Care Systems ◽

Future Research Directions ◽

And Function

Policies, health, and government regulations affect various Health Care organizations and their members. One such policy, the Health Information Technology for Economic and Clinical Health (HITECH) Act, attempts to improve the performance of health care systems through the use of technology, such as Electronic Health Records (Bluementhal, 2010). The most critical task of leadership is to establish a mindset at the top of the organization and function to infuse a culture of excellence throughout the organization (Bentkover, 2012). Health organizations can only progress if their members share a set of values and are single-mindedly committed to achieving openly defined objectives (Bentkover, 2012). This chapter investigates organizational leadership in relation to health care reforms to include trends in health care leadership, Stratified Systems Theory (SST), Systems Thinking, and regulators perspectives. The chapter will consist of the following sections: background; issues controversies, and problems; solutions and recommendation; future research directions; and conclusion.

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Involving citizens in disinvestment decisions: what do health professionals think? Findings from a multi-method study in the English NHS

Health Economics Policy and Law ◽

10.1017/s1744133117000330 ◽

2017 ◽

Vol 13 (2) ◽

pp. 162-188 ◽

Cited By ~ 9

Author(s):

Tom Daniels ◽

Iestyn Williams ◽

Stirling Bryan ◽

Craig Mitton ◽

Suzanne Robinson

Keyword(s):

Health Care ◽

Decision Making ◽

Public Involvement ◽

Health Care Systems ◽

Future Research ◽

Local Health ◽

The Public ◽

Health Care Leaders ◽

Local Health Care ◽

Care Systems

AbstractPublic involvement in disinvestment decision making in health care is widely advocated, and in some cases legally mandated. However, attempts to involve the public in other areas of health policy have been accused of tokenism and manipulation. This paper presents research into the views of local health care leaders in the English National Health Service (NHS) with regards to the involvement of citizens and local communities in disinvestment decision making. The research includes a Q study and follow-up interviews with a sample of health care clinicians and managers in senior roles in the English NHS. It finds that whilst initial responses suggest high levels of support for public involvement, further probing of attitudes and experiences shows higher levels of ambivalence and risk aversion and a far more cautious overall stance. This study has implications for the future of disinvestment activities and public involvement in health care systems faced with increased resource constraint. Recommendations are made for future research and practice.

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Naprapathy Versus Orthopaedic Standard Care for Common Musculoskeletal Disorders: An 8-year Follow-up of a Pragmatic Randomized Controlled Trial in Sweden

10.21203/rs.3.rs-641470/v1 ◽

2021 ◽

Author(s):

Stina Lilje ◽

Andreas Eklund ◽

Anders Wykman ◽

Tobias Sundberg ◽

Eva Skillgate

Keyword(s):

Health Care ◽

Musculoskeletal Disorders ◽

Health Care Systems ◽

Controlled Trial ◽

Bodily Pain ◽

Control Group ◽

National Health Care ◽

Care Systems ◽

Experimental Group

Abstract Background: Musculoskeletal pain is among the most common reasons for seeking care, specialist competence for its treatment in primary care limited and waiting lists for orthopaedics often amongst the longest. Many referrals to orthopaedics do not concern disorders that benefit from surgery. Manual therapy is effective, yet not integrated in national health care systems, and there is a lack of research on other than neck and low back pain, and a lack of long-term follow-ups. The present study evaluates the long-term effects of a complementary therapy for common orthopaedic disorders.Methods: An 8-year follow-up (96 months) of a pragmatic randomized controlled trial of naprapathy (experimental group) versus standard orthopaedic care (control group) for non-surgical patients of working age with the most common musculoskeletal disorders on the waiting lists(n=78). Bodily pain, physical function (SF36), Quality of life (QoL; SF6D), and data on health care utilization were collected.Results: N=75 participants in the original study sample completed the 8-year follow-up. The differences in bodily pain (21,7 (95% CI: 9,1-34,3)), physical function (17,6(6,7-28,4)), and QoLs (0,823 (95% CI: 0.785-0.862) compared with 0,713 (95% CI: 0.668-0.758)) were statistically significantly in favor of the experimental group (p-values<0,01). After sensitivity analysis the experimental group had altogether 260 health care visits compared with 1 161 in the control group.Conclusions:Naprapathy is a continuously effective treatment. Together with earlier research our study suggests that specialized manual therapy should be considered when triaging patients with common non-surgical musculoskeletal disorders in national health care systems.Trial registration: Not applicable, as per information given by ClinicalTrials.gov.

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Barriers and Facilitators to the Implementation of a Mobile Insulin Titration Intervention for Uncontrolled Diabetes Patients: A Qualitative Analysis (Preprint)

10.2196/preprints.13906 ◽

2019 ◽

Author(s):

Erin Rogers ◽

Sneha R Aidasani ◽

Rebecca Friedes ◽

Lu Hu ◽

Aisha T. Langford ◽

...

Keyword(s):

Health Care ◽

Text Messaging ◽

Diabetes Management ◽

Health Care Systems ◽

Unmet Need ◽

Future Research ◽

Management Support ◽

Implementation Climate ◽

Time Saving ◽

Care Systems

BACKGROUND In 2016, a text-messaging intervention to titrate insulin in patients with uncontrolled type 2 diabetes was implemented at two health care systems in New York City. OBJECTIVE This study conducted a qualitative evaluation assessing barriers to, and facilitators of, implementation of the mobile insulin titration intervention (called “MITI”) into usual care. METHODS We conducted in-depth interviews with patients enrolled in the MITI program (N=36) and staff involved in MITI (N=19) at the two health care systems. Interviews were transcribed and iteratively coded by two study investigators both inductively and deductively using a codebook guided by the Consolidated Framework for Implementation Research. RESULTS Multiple facilitator themes emerged: 1) MITI had strong relative advantages to in-person titration including its convenience and time-saving design; 2) the free cost of MITI was important to patients; 3) MITI was easy to use and patients were confident in their ability to use MITI; 4) MITI was compatible with patients’ home routines and clinic workflow; 5) patients and staff perceived MITI to have value beyond insulin titration by reminding and motivating patients to engage in healthy behaviors and providing a source of patient support; and 6) implementation in clinics was made easy by having a strong implementation climate, communication networks to spread information about MITI, and a strong program champion. Barriers identified included: 1) language limitations; 2) initial nurse concerns about scope of practice changes required to deliver MITI; 2) initial provider knowledge gaps about the program; and 3) provider perceptions that MITI may not be appropriate for some patients (e.g., older, not tech-savvy). There was also a theme that emerged during patient and staff interviewees of an unmet need for longer-term, additional diabetes management support among this population, specifically diet, nutrition and exercise support. CONCLUSIONS Patients and staff were overwhelmingly supportive of MITI, believed it had many benefits and believed it was compatible with the clinic workflow and patient’s lives. Initial implementation efforts should address staff training and nurse concerns. Future research should explore options for integrating additional diabetes support for patients.

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J 5 — A Data Processing System for Medical Information

Methods of Information in Medicine ◽

10.1055/s-0038-1636289 ◽

1967 ◽

Vol 06 (01) ◽

pp. 1-6 ◽

Cited By ~ 15

Author(s):

P. Hall ◽

Ch. Mellner ◽

T. Danielsson

Keyword(s):

Medical Records ◽

Medical Information ◽

Health Care Systems ◽

Processing System ◽

Linear Pattern ◽

Flexible Form ◽

Care Systems ◽

Pattern Recognition Analysis ◽

Numeric Information

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Transformation des deutschen Gesundheitssystems Anforderungen und Instrumente

Zeitschrift für Wirtschaftspolitik ◽

10.1515/zfwp-2005-0103 ◽

2005 ◽

Vol 54 (1) ◽

Cited By ~ 1

Author(s):

Torsten Sundmacher

Keyword(s):

Health Care ◽

Health Care Systems ◽

Insurance Companies ◽

System Transformation ◽

Special Health Care ◽

Starting Point ◽

Care Systems ◽

Health Insurance Companies ◽

The Right ◽

State Interventions

AbstractA rising discussion can be seen concerning a transformation of health care systems. Real system changes have till now strengthened competition predominantly and reduced state interventions. Such a procedure also is probably the right way for the German system. Previous reform trials in Germany have i.e. introduced the Integrated Health Care (Integrierte Versorgung, IV). In this special health care form, single contractual regulations are allowed in the contract relationship between doctors and health insurance companies. These contracts partly take the usual collective agreements off. But, until now, the significance of this special form for the normal health care is minor, though. Whether the IV can be a starting point to a system transformation of the health care system by small steps is the question to be examined here.

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Information about Health Care Systems

The Ethics of Universal Health Insurance ◽

10.1093/oso/9780190946838.003.0002 ◽

2019 ◽

pp. 6-53

Author(s):

Alex Rajczi

Keyword(s):

Health Care ◽

Health Insurance ◽

Health Care Systems ◽

Insurance Companies ◽

Private Companies ◽

Single Payer ◽

Before And After ◽

Care Systems ◽

The Government ◽

Universal Health

One cannot discuss the ethics of health policy without understanding how health systems work, so this chapter provides background on the American health system before and after the Affordable Care Act. It also describes two universal health insurance systems the U.S. could adopt. In Canada’s single-payer system, the government serves as the basic insurer for the entire population. In the regulated-market systems of Switzerland and the Netherlands, citizens must purchase health insurance through private companies, and the government’s main jobs are providing subsidies to less wealthy individuals and ensuring that insurance companies deal fairly with citizens. The chapter concludes by examining the core ideas behind consumer-driven health care, a set of specific policies that conservatives often add to their health care proposals.

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Back to Europe: Back to Bismarck?

International Journal of Health Services ◽

10.2190/g36u-bc5g-j71g-py00 ◽

1996 ◽

Vol 26 (4) ◽

pp. 777-802 ◽

Cited By ~ 11

Author(s):

Hans-Ulrich Deppe ◽

Stjepan Oreskovic

Keyword(s):

Health Care ◽

Health Care System ◽

Service Provision ◽

Health Care Systems ◽

Insurance Companies ◽

Central State ◽

German Health Care System ◽

German Health ◽

Care Systems ◽

Care System

Since 1989 there have been enormous changes in all aspects of health policy, and the Former Socialist Economies (FSEs) are facing similar challenges. The general restructuring of politics and economies has resulted in two leading orientations in the transformation of health care systems: the separation of funding and service provision from the state, and the separation of funding and service provision from each other. Many FSEs have already passed legislation establishing a sickness insurance system under a single national funding institution, or a combination of compulsory and voluntary insurance, or a system involving private sector insurance companies in generating compulsory or voluntary health care funding. Due to the peculiarities and specific features of the German health care system, the uncritical intention to implement the “Bismarck model” in the FSEs faces several problems. These can be summarized in one main point: the relative stability of the German health care system, which may be attractive to the FSEs, is based on economic prosperity and on a strong ability to assert the will of the central state institutions; these preconditions are not present in the FSEs.

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