Communicating With Patients About Software for Enhancing Privacy in Secondary Database Research Involving Record Linkage: Delphi Study (Preprint)

BACKGROUND There is substantial prior research on the perspectives of patients on the use of health information for research. Numerous communication barriers challenge transparency between researchers and data participants in secondary database research (eg, waiver of informed consent and knowledge gaps). Individual concerns and misconceptions challenge the trust in researchers among patients despite efforts to protect data. Technical software used to protect research data can further complicate the public's understanding of research. For example, MiNDFIRL (Minimum Necessary Disclosure For Interactive Record Linkage) is a prototype software that can be used to enhance the confidentiality of data sets by restricting disclosures of identifying information during the record linkage process. However, software, such as MiNDFIRL, which is used to protect data, must overcome the aforementioned communication barriers. One proposed solution is the creation of an interactive web-based frequently asked question (FAQ) template that can be adapted and used to communicate research issues to data subjects. OBJECTIVE This study aims to improve communication with patients and transparency about how complex software, such as MiNDFIRL, is used to enhance privacy in secondary database studies to maintain the public's trust in researchers. METHODS A Delphi technique with 3 rounds of the survey was used to develop the FAQ document to communicate privacy issues related to a generic secondary database study using the MiNDFIRL software. The Delphi panel consisted of 38 patients with chronic health conditions. We revised the FAQ between Delphi rounds and provided participants with a summary of the feedback. We adopted a conservative consensus threshold of less than 10% negative feedback per FAQ section. RESULTS We developed a consensus language for 21 of the 24 FAQ sections. Participant feedback demonstrated preference differences (eg, brevity vs comprehensiveness). We adapted the final FAQ into an interactive web-based format that 94% (31/33) of the participants found helpful or very helpful. The template FAQ and MiNDFIRL source code are available on GitHub. The results indicate the following patient communication considerations: patients have diverse and varied preferences; the tone is important but challenging; and patients want information on security, identifiers, and final disposition of information. CONCLUSIONS The findings of this study provide insights into what research-related information is useful to patients and how researchers can communicate such information. These findings align with the current understanding of health literacy and its challenges. Communication is essential to transparency and ethical data use, yet it is exceedingly challenging. Developing FAQ template language to accompany a complex software may enable researchers to provide greater transparency when informed consent is not possible.

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Communicating With Patients About Software for Enhancing Privacy in Secondary Database Research Involving Record Linkage: Delphi Study

Journal of Medical Internet Research ◽

10.2196/20783 ◽

2020 ◽

Vol 22 (12) ◽

pp. e20783

Author(s):

Cason Schmit ◽

Kobi V Ajayi ◽

Alva O Ferdinand ◽

Theodoros Giannouchos ◽

Gurudev Ilangovan ◽

...

Keyword(s):

Informed Consent ◽

Record Linkage ◽

Delphi Study ◽

Communication Barriers ◽

Delphi Panel ◽

Web Based ◽

Research Issues ◽

Secondary Database ◽

Database Research ◽

Prototype Software

Background There is substantial prior research on the perspectives of patients on the use of health information for research. Numerous communication barriers challenge transparency between researchers and data participants in secondary database research (eg, waiver of informed consent and knowledge gaps). Individual concerns and misconceptions challenge the trust in researchers among patients despite efforts to protect data. Technical software used to protect research data can further complicate the public's understanding of research. For example, MiNDFIRL (Minimum Necessary Disclosure For Interactive Record Linkage) is a prototype software that can be used to enhance the confidentiality of data sets by restricting disclosures of identifying information during the record linkage process. However, software, such as MiNDFIRL, which is used to protect data, must overcome the aforementioned communication barriers. One proposed solution is the creation of an interactive web-based frequently asked question (FAQ) template that can be adapted and used to communicate research issues to data subjects. Objective This study aims to improve communication with patients and transparency about how complex software, such as MiNDFIRL, is used to enhance privacy in secondary database studies to maintain the public's trust in researchers. Methods A Delphi technique with 3 rounds of the survey was used to develop the FAQ document to communicate privacy issues related to a generic secondary database study using the MiNDFIRL software. The Delphi panel consisted of 38 patients with chronic health conditions. We revised the FAQ between Delphi rounds and provided participants with a summary of the feedback. We adopted a conservative consensus threshold of less than 10% negative feedback per FAQ section. Results We developed a consensus language for 21 of the 24 FAQ sections. Participant feedback demonstrated preference differences (eg, brevity vs comprehensiveness). We adapted the final FAQ into an interactive web-based format that 94% (31/33) of the participants found helpful or very helpful. The template FAQ and MiNDFIRL source code are available on GitHub. The results indicate the following patient communication considerations: patients have diverse and varied preferences; the tone is important but challenging; and patients want information on security, identifiers, and final disposition of information. Conclusions The findings of this study provide insights into what research-related information is useful to patients and how researchers can communicate such information. These findings align with the current understanding of health literacy and its challenges. Communication is essential to transparency and ethical data use, yet it is exceedingly challenging. Developing FAQ template language to accompany a complex software may enable researchers to provide greater transparency when informed consent is not possible.

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Evaluation model: A performance appraisal model for certified lecturers

SHS Web of Conferences ◽

10.1051/shsconf/20184902003 ◽

2018 ◽

Vol 49 ◽

pp. 02003

Author(s):

Dyah Ayu Puri Palupi ◽

Mardanung Patmo Cahjono ◽

Kristyana Dananti

Keyword(s):

Performance Appraisal ◽

Evaluation Model ◽

Group Discussion ◽

Valuable Contribution ◽

Web Based ◽

Software Application ◽

The Government ◽

Program Test ◽

Prototype Software ◽

Efficient Software

This study aims to develop lecturer performance appraisal model using web-based Integrated Evaluation Model (IEM). The object of this study is certified lecturers in Indonesia, by applying this model, the certification compensation given by the government is really used to enhance lecturer's performance. It is expected that the results of this study can be an important research that produces effective and efficient software to evaluate the lecturers' performance nationally because it involves a 360degree assessment. We have done some activities to develop the prototype software application of Integrated Evaluation Model (IEM) for assessing the certified lecturer's performance. They are 1) preparing the questionnaire indicator for the 360 degree performance appraisal, 2) conduct the program test on the certified lecturer. In this phase, certified lecturers, superior, and students also conduct assessment on certified lecturers through IEM software, 3) conduct Focus Group Discussion (FGD) to gain evaluation and feedback on the effectiveness of the IEM application program. FGD results provide a valuable contribution to the preparation of IEM program design. And the IEM software produced in this research has accommodated all of the results of FGD activities. IEM complements the prior certified lecturer performance appraisal with 360 degrees performance appraisal.

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Insights of project managers into the problems in project management

Construction Economics and Building ◽

10.5130/ajceb.v16i1.4600 ◽

2016 ◽

Vol 16 (1) ◽

pp. 90-103 ◽

Cited By ~ 5

Author(s):

Peter Vincent Livesey

Keyword(s):

Project Management ◽

Delphi Study ◽

Soft Skills ◽

Project Managers ◽

Delphi Panel ◽

Relative Importance ◽

Team Management ◽

Management Skills ◽

Hard Skills ◽

Importance Index

A Delphi study using project managers who had managed projects in excess of $500 million was used to confirm the significance and frequency of problems resulting from the nature of projects. Using the results obtained from the Delphi study a ranking of the problems experienced in these projects was obtained by calculating a Relative Importance Index. Additionally, the Delphi panel members were asked their views concerning the need for traditional project management skills (hard skills) and team management skills (soft skills) as project size increased from below $50 million to over $500 million. A substantial increase in the need for both skills was indicated with the increase in the need for soft skills being the most significant.

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Use of Existing Health Data in Epidemiologic Research–Issues of Informed Consent Under Normal Circumstances and at a Time of Health Crises

Clinical Oncology and Research ◽

10.31487/j.cor.2020.06.09 ◽

2020 ◽

pp. 1-4

Author(s):

Carsten Obel ◽

Jørn Olsen ◽

Uffe Juul Jensen

Keyword(s):

Informed Consent ◽

Personal Data ◽

Health Data ◽

Epidemiologic Research ◽

Health Crisis ◽

Research Issues ◽

Data Analyses ◽

Computer Scientists ◽

Patient Groups ◽

Access To Data

In epidemiologic research we study why we get sick and how we get better. To do this we frequently need large datasets on exposure, diagnoses, treatment and more. We need data often classified as sensitive and regulated by law stating a need for informed consent. We argue that modern epidemiologic research often can be done on existing data without having informed consent and without violating basic ethic principles. We also argue for a timely and fair access to data in approved project. Modern encryption technics and methods of data analyses can reduce the risk of disclosure of personal data to a level close to what we have for anonymous data. If we allow open use of administrative health data and existing research data, we will be able to produce much more information to advance disease prevention, health promotion and treatment. Epidemiologists should collaborate more with computer scientists and patient groups in developing/implementing principles for ‘modern methods of data analyses’. Under a severe health crisis data are in high demand to provide the information needed to prevent deaths and diseases and often time does not permit requiring ‘informed consent’. Such a situation in now plying out worldwide under the Covid-19 pandemic.

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QMS external quality auditors’ education framework: findings from an iterative Delphi study

The TQM Journal ◽

10.1108/tqm-03-2021-0091 ◽

2021 ◽

Vol ahead-of-print (ahead-of-print) ◽

Author(s):

Roslina Ab Wahid ◽

Nigel Peter Grigg

Keyword(s):

Operations Management ◽

Delphi Study ◽

Value Added ◽

Accreditation Body ◽

Delphi Panel ◽

External Quality ◽

Content Type ◽

Curriculum Framework ◽

And Performance ◽

Audit Performance

PurposeThe paper aims to describe the development of an open curriculum framework of external quality auditors (EQAs) education. The study was commissioned by accreditation body JAS-ANZ, with the objective of improving EQA audit performance, resulting in more effective audits that can add value to client organisations.Design/methodology/approachThe key sets of knowledge, skills and attributes that auditors should possess were identified from the literature and an initial survey, and validated through several rounds of experts' opinion using the Delphi technique. The Delphi panel consisted of: top managers; quality practitioners; academicians; quality auditors, consultants and managers; a financial auditor and other managers. Kendall's coefficient of concordance (Kendall's W) was used to measure the level of agreement of the experts' ranking scores.FindingsPanelists believed there is a need for EQAs to be more broadly grounded in certain knowledge, skills, and attributes. The knowledge requirements for EQAs were: audit principles, process and methods; quality management principles, system, and standards; risk management; business process and operations management; applicable legal, regulatory and contractual requirements; strategic planning; and performance measurement. EQAs need strong skills in communication, auditing, people relations, critical thinking, report writing, leadership, coaching and coordination. The attributes considered essential are objectivity, integrity, ethics and professionalism; being observant, perceptive, articulate and confident; having good judgement; being flexible, adaptive, diplomatic, fair and open-minded. Based on these outcomes, the curriculum framework of EQAs was developed.Originality/valueThis study highlights the core elements required in a syllabus to prepare EQAs for value-added auditing in the present and future. The educational framework can be adopted by accreditation and certification bodies to evaluate and improve their auditors' audit performance.

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Medications Used Routinely in Primary Care to be Dose-Adjusted or Avoided in People With Chronic Kidney Disease: Results of a Modified Delphi Study

Annals of Pharmacotherapy ◽

10.1177/1060028019897371 ◽

2020 ◽

Vol 54 (7) ◽

pp. 625-632 ◽

Cited By ~ 2

Author(s):

Leena Taji ◽

Marisa Battistella ◽

Allan K. Grill ◽

Jessie Cunningham ◽

Brenda L. Hemmelgarn ◽

...

Keyword(s):

Primary Care ◽

Chronic Kidney Disease ◽

Kidney Disease ◽

Delphi Study ◽

Dose Adjustment ◽

Sglt2 Inhibitor ◽

Primary Care Providers ◽

Delphi Panel ◽

Care Providers ◽

Modified Delphi

Background: Chronic kidney disease (CKD) affects up to 18% of those over the age of 65 years. Potentially inappropriate medication prescribing in people with CKD is common. Objectives: Develop a pragmatic list of medications used in primary care that required dose adjustment or avoidance in people with CKD, using a modified Delphi panel approach, followed by a consensus workshop. Methods: We conducted a comprehensive literature search to identify potential medications. A group of 17 experts participated in a 3-round modified Delphi panel to identify medications for inclusion. A subsequent consensus workshop of 8 experts reviewed this list to prioritize medications for the development of point-of-care knowledge translation materials for primary care. Results: After a comprehensive literature review, 59 medications were included for consideration by the Delphi panel, with a further 10 medications added after the initial round. On completion of the 3 Delphi rounds, 66 unique medications remained, 63 requiring dose adjustment and 16 medications requiring avoidance in one or more estimated glomerular filtration rate categories. The consensus workshop prioritized this list further to 24 medications that must be dose-adjusted or avoided, including baclofen, metformin, and digoxin, as well as the newer SGLT2 inhibitor agents. Conclusion and Relevance: We have developed a concise list of 24 medications commonly used in primary care that should be dose-adjusted or avoided in people with CKD to reduce harm. This list incorporates new and frequently prescribed medications and will inform an updated, easy to access source for primary care providers.

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Design, functionality, and validity of the SWInCaRe, a web-based application used to administer cancer registry records

Health Informatics Journal ◽

10.1177/1460458217704253 ◽

2017 ◽

Vol 25 (1) ◽

pp. 149-160 ◽

Cited By ~ 1

Author(s):

Giovanni Benedetto ◽

Alessia Di Prima ◽

Salvatore Sciacca ◽

Giuseppe Grosso

Keyword(s):

Cost Analysis ◽

Cancer Registry ◽

Record Linkage ◽

Cost Efficiency ◽

Data Linkage ◽

Efficiency Analysis ◽

Data Sources ◽

Health It ◽

Web Based ◽

The Web

We described the design of a web-based application (the Software Integrated Cancer Registry—SWInCaRe) used to administer data in a cancer registry and tested its validity and usability. A sample of 11,680 records was considered to compare the manual and automatic procedures. Sensibility and specificity, the Health IT Usability Evaluation Scale, and a cost-efficiency analysis were tested. Several data sources were used to build data packages through text-mining and record linkage algorithms. The automatic procedure showed small yet measurable improvements in both data linkage process and cancer cases estimation. Users perceived the application as useful to improve the time of coding and difficulty of the process: both time and cost-analysis were in favor of the automatic procedure. The web-based application resulted in a useful tool for the cancer registry, but some improvements are necessary to overcome limitations observed and to further automatize the process.

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A Web-Based Delphi Study on the Indications of Chest Radiographs for Patients in ICUs

CHEST Journal ◽

10.1378/chest.06-3014 ◽

2008 ◽

Vol 133 (5) ◽

pp. 1107-1112 ◽

Cited By ~ 38

Author(s):

Gilles Hejblum ◽

Vincent Ioos ◽

Jean-François Vibert ◽

Pierre-Yves Böelle ◽

Ludivine Chalumeau-Lemoine ◽

...

Keyword(s):

Delphi Study ◽

Chest Radiographs ◽

Web Based

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Are You for Real? Engineering a Virtual Lab for the Sports Sciences Using Wearables and IoT

Proceedings ◽

10.3390/proceedings2020049110 ◽

2020 ◽

Vol 49 (1) ◽

pp. 110 ◽

Cited By ~ 1

Author(s):

Joel Benesha ◽

Jim Lee ◽

Daniel A. James ◽

Barbara White

Keyword(s):

Inertial Sensor ◽

Tertiary Education ◽

Three Dimensional ◽

Sensor Data ◽

Web Based ◽

Sports Science ◽

Virtual Lab ◽

Prototype Software ◽

Sports Sciences ◽

3D Motion Capture

In tertiary education, disciplines such as sports science that require experimental components in their courses represent a significant challenge for online and distance education. This paper demonstrates the design and construction of an enriched experiment, together with the prototype software solution which can all be operated remotely using a web-based client. It presents research that investigated how to visualise data from internet of things (IoT) sensor devices (inertial sensor) used for tracking football sideline throw-ins. In this simple experiment, data was collected from one footballer, fitted with a single inertial sensor. A two-dimensional (2D) video, three-dimensional (3D) motion capture system and inertial sensor were all used to detect the release point of a sideline ball throw-in. In this project, inertial sensor data was used to create a 3D model using web graphical language and three.js.

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