Understanding the information needs of public health practitioners: a literature review to inform design of an interactive digital knowledge management system

The need for rapid access to information to support critical decisions in public health cannot be disputed; however, development of such systems requires an understanding of the actual information needs of public health professionals. This paper reports the results of a literature review focused on the information needs of public health professionals. The authors reviewed the public health literature to answer the following questions: (1) What are the information needs of public health professionals? (2) In what ways are those needs being met? (3) What are the barriers to meeting those needs? (4) What is the role of the Internet in meeting information needs? The review was undertaken in order to develop system requirements to inform the design and development of an interactive digital knowledge management system. The goal of the system is to support the collection, management, and retrieval of public health documents, data, learning objects, and tools.Method:The search method extended beyond traditional information resources, such as bibliographic databases, tables of contents (TOC), and bibliographies, to include information resources public health practitioners routinely use or have need to use—for example, grey literature, government reports, Internet-based publications, and meeting abstracts.Results:Although few formal studies of information needs and information-seeking behaviors of public health professionals have been reported, the literature consistently indicated a critical need for comprehensive, coordinated, and accessible information to meet the needs of the public health workforce. Major barriers to information access include time, resource reliability, trustworthiness/credibility of information, and “information overload”.Conclusions:Utilizing a novel search method that included the diversity of information resources public health practitioners use, has produced a richer and more useful picture of the information needs of the public health workforce than other literature reviews. There is a critical need for public health digital knowledge management systems designed to reflect the diversity of public health activities, to enable human communications, and to provide multiple access points to critical information resources. Public health librarians and other information specialists can serve a significant role in helping public health professionals meet their information needs through the development of evidence-based decision support systems, human-mediated expert searching and training in the use information retrieval systems.     

Co-design and development of online video resources about immunotherapy with patients and their family

BackgroundPatients receiving novel treatments like immune checkpoint inhibitor therapy (ICI or immunotherapy) to treat their cancer require comprehensive information so they know what to expect and to encourage the identification and reporting of possible side-effects. Videos using patient stories can be reassuring and an effective method for conveying health information.ObjectiveThe objective of this study was to use a co-design process to develop video resources about immunotherapy to identify a) the key informational and supportive care needs of patients and family carers and b) topics clinicians recommended be addressed during pre-treatment nurse-led education.Patient involvementExperience Based Co-design (EBCD) provided the framework for video development, to facilitate patient and carer involvement in every stage of research design and implementation, and video design and development.MethodsData were collected and used in four stages: 1) qualitative interviews, 2) co-design workshop, 3) filming plan and 4) feedback and editing.ResultsThirty-five individuals contributed to the development of a suite of five videos called “Immunotherapy: What to Expect”. Videos covered general treatment information, preparation for infusion, potential side-effects, balancing lifestyle with treatment and seeking support. Video run time ranges from 6 to 15 min.DiscussionThe EBCD process ensured that videos were developed to meet patient and carer identified needs associated with commencing and managing ICI therapy. The structure of EBCD in facilitating patient and carer involvement throughout the research and video development process ensured transparency throughout the project, and continuity of message, scope and outcomes.Practical ValueEBCD is a useful framework for developing patient-centred health resources. The videos developed are now available for patients and carers via YouTube, and provide education and support tailored to this groups’ needs regarding ICI therapy for cancer.     

Perspectives on wellness self-monitoring tools for older adults

PurposeOur purpose was to understand different stakeholder perceptions about the use of self-monitoring tools, specifically in the area of older adults’ personal wellness. In conjunction with the advent of personal health records, tracking personal health using self-monitoring technologies shows promising patient support opportunities. While clinicians’ tools for monitoring of older adults have been explored, we know little about how older adults may self-monitor their wellness and health and how their health care providers would perceive such use.MethodsWe conducted three focus groups with health care providers (n = 10) and four focus groups with community-dwelling older adults (n = 31).ResultsOlder adult participants’ found the concept of self-monitoring unfamiliar and this influenced a narrowed interest in the use of wellness self-monitoring tools. On the other hand, health care provider participants showed open attitudes toward wellness monitoring tools for older adults and brainstormed about various stakeholders’ use cases. The two participant groups showed diverging perceptions in terms of: perceived uses, stakeholder interests, information ownership and control, and sharing of wellness monitoring tools.ConclusionsOur paper provides implications and solutions for how older adults’ wellness self-monitoring tools can enhance patient-health care provider interaction, patient education, and improvement in overall wellness.     

Optimization of infobutton design and Implementation: A systematic review

ObjectiveInfobuttons are clinical decision tools embedded in the electronic health record that attempt to link clinical data with context sensitive knowledge resources. We systematically reviewed technical approaches that contribute to improved infobutton design, implementation and functionality.MethodsWe searched databases including MEDLINE, EMBASE, and the Cochrane Library database from inception to March 1, 2016 for studies describing the use of infobuttons. We selected full review comparative studies, usability studies, and qualitative studies examining infobutton design and implementation. We abstracted usability measures such as user satisfaction, impact, and efficiency, as well as prediction accuracy of infobutton content retrieval algorithms and infobutton adoption/interoperability.ResultsWe found 82 original research studies on infobuttons. Twelve studies met criteria for detailed abstraction. These studies investigated infobutton interoperability (1 study); tools to help tailor infobutton functionality (1 study); interventions to improve user experience (7 studies); and interventions to improve content retrieval by improving prediction of relevant knowledge resources and information needs (3 studies). In-depth interviews with implementers showed the Health Level Seven (HL7) Infobutton standard to be simple and easy to implement. A usability study demonstrated the feasibility of a tool to help medical librarians tailor infobutton functionality. User experience studies showed that access to resources with which users are familiar increased user satisfaction ratings; and that links to specific subsections of drug monographs increased information seeking efficiency. However, none of the user experience improvements led to increased usage uptake. Recommender systems based on machine learning algorithms outperformed hand-crafted rules in the prediction of relevant resources and clinicians’ information needs in a laboratory setting, but no studies were found using these techniques in clinical settings. Improved content indexing in one study led to improved content retrieval across three health care organizations.ConclusionBest practice technical approaches to ensure optimal infobutton functionality, design and implementation remain understudied. The HL7 Infobutton standard has supported wide adoption of infobutton functionality among clinical information systems and knowledge resources. Limited evidence supports infobutton enhancements such as links to specific subtopics, configuration of optimal resources for specific tasks and users, and improved indexing and content coverage. Further research is needed to investigate user experience improvements to increase infobutton use and effectiveness.     

The evolution of a hospital library patient education literature program.

The library staff of the Englewood Hospital Medical Library has developed a patient education literature program to meet the needs of patients and the public for health information. A subcommittee on patient education of the Medical Library Committee oversees the project. Lists of health resources, by subject, have been compiled and are available on nursing stations and in patient waiting areas. Materials are delivered by doctors, nurse clinicians or librarians (at a doctor's request) and documented in the nurse's notes. Community members are also encouraged to come into the library by appointment to seek answers to their health questions.     

Tailored and Integrated Web-Based Tools for Improving Psychosocial Outcomes of Cancer Patients: The DoTTI Development Framework

Background

Effective communication with cancer patients and their families about their disease, treatment options, and possible outcomes may improve psychosocial outcomes. However, traditional approaches to providing information to patients, including verbal information and written booklets, have a number of shortcomings centered on their limited ability to meet patient preferences and literacy levels. New-generation Web-based technologies offer an innovative and pragmatic solution for overcoming these limitations by providing a platform for interactive information seeking, information sharing, and user-centered tailoring.

Objective

The primary goal of this paper is to discuss the advantages of comprehensive and iterative Web-based technologies for health information provision and propose a four-phase framework for the development of Web-based information tools.

Methods

The proposed framework draws on our experience of constructing a Web-based information tool for hematological cancer patients and their families. The framework is based on principles for the development and evaluation of complex interventions and draws on the Agile methodology of software programming that emphasizes collaboration and iteration throughout the development process.

Results

The DoTTI framework provides a model for a comprehensive and iterative approach to the development of Web-based informational tools for patients. The process involves 4 phases of development: (1) Design and development, (2) Testing early iterations, (3) Testing for effectiveness, and (4) Integration and implementation. At each step, stakeholders (including researchers, clinicians, consumers, and programmers) are engaged in consultations to review progress, provide feedback on versions of the Web-based tool, and based on feedback, determine the appropriate next steps in development.

Conclusions

This 4-phase framework is evidence-informed and consumer-centered and could be applied widely to develop Web-based programs for a diverse range of diseases.     

Personal Electronic Health Records: Understanding User Requirements and Needs in Chronic Cancer Care

Background

The integration of new information and communication technologies (ICTs) is becoming increasingly important in reorganizing health care. Adapting ICTs as supportive tools to users'' needs and daily practices is vital for adoption and use.

Objective

In order to develop a Web-based personal electronic health record (PEPA), we explored user requirements and needs with regard to desired information and functions.

Methods

A qualitative study across health care sectors and health professions was conducted in a regional health care setting in Germany. Overall, 10 semistructured focus groups were performed, collecting views of 3 prospective user groups: patients with colorectal cancer (n=12) and representatives from patient support groups (n=2), physicians (n=17), and non-medical HCPs (n=16). Data were audio- and videotaped, transcribed verbatim, and thematically analyzed using qualitative content analysis.

Results

For both patients and HCPs, it was central to have a tool representing the chronology of illness and its care processes, for example, patients wanted to track their long-term laboratory findings (eg, tumor markers). Designing health information in a patient accessible way was highlighted as important. Users wanted to have general and tumor-specific health information available in a PEPA. Functions such as filtering information and adding information by patients (eg, on their well-being or electronic communication with HCPs via email) were discussed.

Conclusions

In order to develop a patient/user centered tool that is tailored to user needs, it is essential to address their perspectives. A challenge for implementation will be how to design PEPA’s health data in a patient accessible way. Adequate patient support and technical advice for users have to be addressed.     

Understanding online health information: Evaluation,tools, and strategies

ObjectiveConsidering the status of the Internet as a prominent source of health information, assessing online health material has become a central issue in patient education. We describe the strategies available to evaluate the characteristics of online health information, including readability, emotional content, understandability, usability.MethodsPopular tools used in assessment of readability, emotional content and comprehensibility of online health information were reviewed. Tools designed to evaluate both printed and online material were considered.ResultsReadability tools are widely used in online health material evaluation and are highly covariant. Assessment of emotional content of online health-related communications via sentiment analysis tools is becoming more popular. Understandability and usability tools have been developed specifically for health-related material, but each tool has important limitations and has been tested on a limited number of health issues.ConclusionDespite the availability of numerous assessment tools, their overall reliability differs between readability (high) and understandability (low). Approaches combining multiple assessment tools and involving both quantitative and qualitative observations would optimize assessment strategies.Practice implicationsEffective assessment of online health information should rely on mixed strategies combining quantitative and qualitative evaluations. Assessment tools should be selected according to their functional properties and compatibility with target material.     

Humble doctors,healthy patients? Exploring the relationships between clinician humility and patient satisfaction,trust, and health status

ObjectiveIn medicine, numerous commentaries implore clinicians (e.g., physicians, physician assistants, nurse practitioners) to display more humility. However, given the complex power dynamics between patients and clinicians, one should not presume that patients desire and appreciate humble clinicians. This paper examines the relationship between clinician humility and patient outcomes, and aims to provide empirical evidence for the significance of clinician humility.MethodsIn two studies, patients (N = 497) recalled their most recent visit to a clinician through an online survey platform (Qualtrics). Patients rated their clinician’s humility, satisfaction and trust with their clinician, and health status. They also provided demographic information (e.g., gender, race, subjective SES), details about their clinician (e.g., gender, race, professional status) and information about their last medical visit with this clinician (e.g., purpose of visit, wait time during visit).ResultsThrough hierarchical multiple regression, we demonstrated that clinician humility positively predicted patient satisfaction, trust, and self-report health (only in Study 2) above and beyond patient, clinician, and visit characteristics.ConclusionThe results demonstrated that clinician humility can predict important patient outcomes above and beyond objective characteristics of the medical interaction.Practice ImplicationsThese findings may shape clinician-patient interactions by validating the pursuit of humility during medical encounters.     

Blended face-to-face and online/computer-based education approaches in chronic disease self-management: A critical interpretive synthesis

ObjectiveTo review the literature on chronic disease self-management programs that blend face-to-face and online/computer-based education design and delivery.MethodsA critical interpretive synthesis was conducted. Studies that described blended chronic disease self-management programs were reviewed. Two reviewers performed independent database searches, eligibility screening, and data extraction. Findings were synthesized using a conceptual mapping process.ResultsTwelve articles were included in the final review. Studies focused on patients with diagnoses of diabetes, asthma, and chronic obstructive pulmonary disorder. Factors influencing the design and delivery of programs focused on patient characteristics (such as disease prognosis, time since diagnosis, social determinants of health, health literacy, and proficiency with online/computer-based technologies).ConclusionsBlended learning self-management programs should consider the suitability of programs in light of health conditions and patient characteristics. Individual patient needs can be identified through clinician-driven assessments, including collaborative goal setting and the selection of pertinent educational tools.Practice ImplicationsWhen considering the design and delivery of chronic disease self-management education programs, healthcare providers should consider three factors: 1) patient characteristics, 2) learning perspectives, and 3) design technology options that best meet patient abilities, clinician expertise, and administrative capacity.     

Educational needs about cancer family history and genetic counseling for cancer risk among frontline healthcare clinicians in New York City

PurposeThis study investigated the educational needs of frontline healthcare clinicians about cancer family history and genetic counseling for cancer risk.MethodsWe conducted a voluntary, anonymous survey among (1) general medicine clinicians, (2) obstetrics/gynecology clinicians, and (3) nurse practitioners at Mount Sinai School of Medicine in New York City.ResultsA total of 143 clinicians completed the survey (response rate 81%). The majority of clinicians (77.5%) reported regularly completing family histories on cancer risk for their patients, but only 1.7% considered themselves “experts” in interpreting risk to make prevention, screening, and treatment recommendations. Numerous barriers to cancer family history collection were noted. More than half (55.8%) reported referring patients to genetic counseling, although only 14.3% reported confidence in their ability to make appropriate referrals. The majority reported that they would apply genetic counseling for cancer risk in their practice if they had the skills (84.9%). There was some variability found regarding specialty.ConclusionDespite widespread use of family histories for cancer risk, barriers remain to appropriate cancer risk management among frontline healthcare clinicians. Development of educational training programs to assist clinicians with collection of cancer family history information, interpretation, and appropriate referral along with teaching direct application of a modified form of genetic counseling for low-medium risk patients and referral of patients at genetic risk is warranted.     

Barriers and facilitators to the availability of efficacious self-directed digital health tools for adults living with cancer and their caregivers: A systematic literature review and author survey study

ObjectiveThis study aimed to examine barriers and facilitators to the dissemination of efficacious self-directed digital health tools for adults affected by cancer, and quantify funding used to develop and evaluate these digital health tools.MethodsWe conducted: (1) a systematic literature review to identify efficacious self-directed digital health tools for adults affected by cancer, published between 2009 and 2019 and (2) an author survey to identify barriers and facilitators to dissemination of those tools, grant funding and the user centredness of their design (UCD) process.ResultsOf 1314 screened articles, 29 articles describing 26 tools met the inclusion criteria. From 26 surveys sent, 12 were completed, 6 of which described disseminated tools. Whilst researchers’ motivation and infrastructure support facilitate tool dissemination, limited funds, lack of infrastructure and limited research timelines are the most common barriers. A median of AUD$250,000 was spent on tools not disseminated to end-users.ConclusionAlthough incorporating UCD processes in the development of digital health tools is important, it is imperative to integrate implementation processes into the planning stages of tool development to ensure dissemination.Practice ImplicationsResearchers, academic institutions, funding agencies and government and non-government organisations all have roles to play to support long-term implementation.     

Patient perceptions of a decision support tool to assist with young women’s contraceptive choice

ObjectiveContraceptive decision support tools (DSTs) have been suggested as a way to provide patient-centered contraceptive care, but little is known about the role they play in women’s decision-making. The aim of this study is to understand patients’ perceptions of the value of a contraceptive DST.MethodsWe conducted 21 semi-structured interviews with unmarried women aged 18–29 from an integrated health care system who viewed the DST. Thematic analysis was conducted to identify common themes in the participants’ experience.ResultsFour themes were identified: Informative; Narrowing down options; Tool vs. doctor; and Preparation for a clinical visit. In general, participants felt the tool was valuable because it provided them relevant information and facilitated their decision-making process by narrowing down contraceptive options. Participants felt the tool could prepare them for a visit with their health care provider by helping them identify questions for their provider, but also saw distinctions between the DST and what their provider could offer.ConclusionContraceptive DSTs are valuable to their users when they include information on contraceptive attributes women deem important and allow for user-driven tailoring.Practice implicationsContraceptive DSTs may address patient informational needs and can serve as a complement to provider counseling.     

Factors affecting cancer patients’ electronic communication with providers: Implications for COVID-19 induced transitions to telehealth

ObjectiveBecause of the pandemic, electronic communication between patients and clinicians has taken on increasing significance in the delivery of cancer care. The study explored personal, clinical, and technology factors predicting cancer survivors’ electronic communication with clinicians.MethodsData for this investigation came from the Health Information National Trends Survey (HINTS5, Cycle 2) that included 593 respondents who previously or currently had cancer. Multivariate regression analyses were used to predict electronic communication with clinicians. Predictors included demographic variables and health status, technology use (online health information-seeking behavior, tracking of health-related data such as using a Fitbit), and quality of past communication experiences with clinicians.ResultsIn this pre COVID-19 sample, 42 % respondents (N = 252) did not engage in any type of electronic communication (e.g., emailing, texting, data sharing) with providers. In multivariate analyses, predictors of more electronic communication with clinicians included frequency of seeking health-related information online (ß = .267, p < .001) and better communication experiences with clinicians (ß = .028, p = .034), while no demographic variable showed significance. The technology use variables (online health information seeking, health tracking) were significantly higher predictors of electronic communication with clinicians (ΔR² = .142, p < .001) than was past experiences with clinicians (ΔR² = .029, p = .016).ConclusionsAccess and past experience with interactive media technologies are strong predictors of cancer patients’ electronic communication than with clinicians. Adoption of telehealth technology likely depends as much on patients’ relationships with technology as it does their relationships with clinicians.Practice implicationsSince Covid-19, cancer care providers have turned to telehealth provide patients with needed cancer care services. Enhancing patients’ digital competence and experience with electronic communication will help them more easily navigate telehealth care. Providers can leverage their relationship with patients to facilitate more effective use of telehealth services.     

Informatics and clinical genome sequencing: opening the black box

Adoption of whole-genome sequencing as a routine biomedical tool is dependent not only on the availability of new high-throughput sequencing technologies, but also on the concomitant development of methods and tools for data collection, analysis, and interpretation. It would also be enormously facilitated by the development of decision support systems for clinicians and consideration of how such information can best be incorporated into care pathways. Here we present an overview of the data analysis and interpretation pipeline, the wider informatics needs, and some of the relevant ethical and legal issues.Genet Med 2013:15(3):165–171     

Design, application and testing of the Work Observation Method by Activity Timing (WOMBAT) to measure clinicians' patterns of work and communication

BackgroundEvidence regarding how health information technologies influence clinicians’ patterns of work and support efficient practices is limited. Traditional paper-based data collection methods are unable to capture clinical work complexity and communication patterns. The use of electronic data collection tools for such studies is emerging yet is rarely assessed for reliability or validity.AimOur aim was to design, apply and test an observational method which incorporated the use of an electronic data collection tool for work measurement studies which would allow efficient, accurate and reliable data collection, and capture greater degrees of work complexity than current approaches.MethodsWe developed an observational method and software for personal digital assistants (PDAs) which captures multiple dimensions of clinicians’ work tasks, namely what task, with whom, and with what; tasks conducted in parallel (multi-tasking); interruptions and task duration. During field-testing over 7 months across four hospital wards, fifty-two nurses were observed for 250 h. Inter-rater reliability was tested and validity was measured by (i) assessing whether observational data reflected known differences in clinical role work tasks and (ii) by comparing observational data with participants’ estimates of their task time distribution.ResultsObservers took 15–20 h of training to master the method and data collection process. Only 1% of tasks observed did not match the classification developed and were classified as ‘other’. Inter-rater reliability scores of observers were maintained at over 85%. The results discriminated between the work patterns of enrolled and registered nurses consistent with differences in their roles. Survey data (n = 27) revealed consistent ratings of tasks by nurses, and their rankings of most to least time-consuming tasks were significantly correlated with those derived from the observational data. Over 40% of nurses’ time was spent in direct care or professional communication, with 11.8% of time spent multi-tasking. Nurses were interrupted approximately every 49 min. One quarter of interruptions occurred while nurses were preparing or administering medications.ConclusionsThis method efficiently produces reliable and valid data. The multi-dimensional nature of the data collected provides greater insights into patterns of clinicians’ work and communication than has previously been possible using other methods.     

Acceptance and use of health information technology by community-dwelling elders

ObjectivesWith the worldwide population growing in age, information technology may help meet important needs to prepare and support patients and families for aging. We sought to explore the use and acceptance of information technology for health among the elderly by reviewing the existing literature.MethodsReview of literature using PubMed and Google Scholar, references from relevant papers, and consultation with experts.ResultsElderly people approach the Internet and health information technology differently than younger people, but have growing rates of adoption. Assistive technology, such as sensors or home monitors, may help ‘aging in place’, but these have not been thoroughly evaluated. Elders face many barriers in using technology for healthcare decision-making, including issues with familiarity, willingness to ask for help, trust of the technology, privacy, and design challenges.ConclusionsBarriers must be addressed for these tools to be available to this growing population. Design, education, research, and policy all play roles in addressing these barriers to acceptance and use.     

Unleashing the power of human genetic variation knowledge: New Zealand stakeholder perspectives

PurposeThis study aimed to characterize the challenges in using genetic information in health care and to identify opportunities for improvement.MethodsTaking a grounded theory approach, semistructured interviews were conducted with 48 participants to collect multiple stakeholder perspectives on genetic services in New Zealand.ResultsThree themes emerged from the data: (1) four service delivery models were identified in operation, including both those expected models involving genetic counselors and variations that do not route through the formal genetic service program; (2) multiple barriers to sharing and using genetic information were perceived, including technological, organizational, institutional, legal, ethical, and social issues; and (3) impediments to wider use of genetic testing technology, including variable understanding of genetic test utilities among clinicians and the limited capacity of clinical genetic services. Targeting these problems, information technologies and knowledge management tools have the potential to support key tasks in genetic services delivery, improve knowledge processes, and enhance knowledge networks.ConclusionBecause of the effect of issues in genetic information and knowledge management, the potential of human genetic variation knowledge to enhance health care delivery has been put on a “leash.”     

A scoping review of communication tools applicable to patients and their primary care providers after discharge from hospital

ObjectiveTransitions from hospital to home are high-risk episodes. Communication problems between patients/carers and their primary healthcare providers are a central part of the risk. This literature review aimed to identify any existing tools or information (including secondary care instruments) that would facilitate designing new communication instruments for primary care to manage and mitigate risk at discharge.MethodFive databases (Pubmed, Embase, Cinahl, Web of Science and Cochrane) were searched using a three stem approach (primary/transitional care, discharge period, communication). A dual reviewer system was used, following PRISMA guidelines.ResultsFrom 61 full text articles a total of ten tools were found, 25 articles contained other useful content, 19 further tools were found in grey literature. Most material originated from the USA and described hospital-based transitional care interventions.ConclusionNo ready-made patient/provider communication tool for the post-discharge period in primary care was found. Future communication tools should enhance education and engagement of patients so they feel able to initiate communication.Practice implicationsCollating post-discharge communication material is of importance to improving the safety of care transitions and will enable creation of new tools specifically designed for primary care. These tools will improve patient activation (‘the knowledge, skills and confidence a person has in managing their own health and care’) with the ultimate aim of reducing error and harm in primary care through improved communication of healthcare decisions.