Exploring the Interface of Genetics, Genomics, and Older Adults

This dissertation addresses the interface of genetics, genomics, and older adults through a collection of three manuscripts that examine genetic and genomic testing and decision-making across age groups. The dissertation offers evaluations of a new lens for decision-making in genetics and genomics, a contextualization of the differences and similarities of perceptions and beliefs that exist among age groups engaging in direct-to-consumer personal genetic testing (DTC PGT), an identification of two factors that influence the decision to engage in DTC PGT, and an expansion of the current applications of Protection Motivation Theory to include disclosure, finance, and advance directive-management behaviors related to DTC PGT results. Together these three manuscripts support and expand on previous understandings about older adults and decision-making in genetics and genomics. The dissertation findings identify many unique qualities of the 60+year old age group while also finding similarities that span age groups. These findings support the need for further examination of both age-group differences and the phenomenon of genetic or genomic decision-making. The differences and similarities among age groups will provide initial findings on which future work in decision-making and decision-support can be built. The dissertation’s focus on context as a key component of decision-making is both timely and forward looking. The need to create unique and informed decision-support interventions is growing as the personalized medicine movement begins to bring in more genetic information. Consumer-driven healthcare demands consumer-sensitive approaches. The use of behavioral economics and the Protection Motivation Theory as guides will help healthcare professionals to address the age-group differences and the individual contexts that shape the genetic decision-making process

A Comprehensive Review of Impacts of Social Media and Information Technology on Decision Making of General People

Social media platforms and information technology have revolutionized the way individuals obtain, use, and share information in the digital age. This has affected people's decision-making processes in a variety of fields. This thorough analysis investigates the complex effects of information technology and social media on the way the public makes decisions. The impact of social media and information technology on decision-making in domains like politics, healthcare, education, consumer behavior, and interpersonal relationships is examined in this review, which draws on an extensive array of scholarly literature, empirical investigations, and theoretical frameworks. According to the research, information technology and social media can influence decisions in both favorable and unfavorable ways. On the one hand, these platforms give users access to a multitude of information, empowering them to take part in social movements, activism, and civic engagement with greater knowledge and understanding. Social media platforms also enable peer-to-peer communication, cooperation, and knowledge sharing, giving people the confidence to ask their social networks for guidance, affirmation, and support. In the digital age, the review emphasizes how psychological variables, cognitive biases, and sociocultural influences shape decision-making processes. In online environments, people's information processing, judgment-making, and decision-making processes are greatly influenced by social comparison, confirmation bias, FOMO, and social validation, among other factors. This thorough analysis advances our knowledge of the intricate interactions among decision-making, information technology, and social media. Informed decision making, digital literacy, and the moral application of social media and information technology in society are all goals of this review, which synthesizes the literature and highlights new trends to guide future research, legislative efforts, and hands-on interventions.&nbsp

Clinical decision support for immunization (CDSi)

The federal Advisory Committee on Immunization Practices (ACIP) provides expert advice and guidance on the use of vaccines and related agents for the control of vaccine-preventable disease in the United States. ACIP recommend-ations include the age for vaccine administration, number of doses, dosing interval, special indications for at-risk individuals, and precautions and contraindications.As ACIP recommendations are published, evaluation and forecasting engines\ue2\u20ac\u201dknown as Clinical Decision Support (CDS) engines\ue2\u20ac\u201dneed to be updated to determine recommended immunizations for a patient and deliver those recommendations to the healthcare provider.Funded by the Immunization Information System Support Branch at the Centers for Disease Control and Prevention (CDC), the Clinical Decision Support for Immunization (CDSi) project was established to harmonize CDS engine outputs by developing a technical framework and resources focusing on the following goals:\ue2\u20ac\ua2 Improving the process of updating CDS logic with new and/or changed ACIP recommendations\ue2\u20ac\ua2 Increasing the accuracy and consistency of immunization evaluation and forecasting\ue2\u20ac\ua2 Improving the ease of developing and maintaining immunization CDS productsPublication date from document properties.cdsi-miniguide.pd

Participation of patients in decisions about treatment for cancer

The primary aim of treatment for cancer is to improve the quality of life of patients by curing them or producing a long and worthwhile remission and ameliorating their worst symptoms. For many types of cancers, however, the most appropriate management is not always clear or based on the best evidence from well conducted randomised controlled trials. Clinicians may have more than one therapeutic option to offer patients and there are many calls for more involvement of patients in decision making about their treatment. Two fundamental issues should be determined when discussing treatment choices with patients—their own preferences about the amount and type of information that is needed and their actual rather than perceived desire for participation in decision making. A clear distinction needs to be made between a desire for information and a wish to assume responsibility for decision making. They are not one and the same thing. In one study of women with breast cancer, improvements in quality of life brought about by reduced anxiety and depression and better adjustment were primarily related to satisfaction with information they got, not merely involvement with decision making about the type of surgery.1 Many studies have shown that patients want much more information than their doctors believe they do.2 We also know that the ability of doctors to predict which patients want an active, shared, or passive role in decision making is very poor in palliative care and when active, potentially curative treatment is discussed. 3 4 Patients' preferences about choice of treatment are poorly understood and usually based on intuitive assumptions about their perceived intelligence, age, or quality of life. This problem is not confined to the United Kingdom, although the poor ratio of oncologists to patients does mean that good patient centred communication about choices available and their consequences is easily omitted in busy clinics. We await with interest more results from the study to understand prognoses and preferences for outcomes and risks of treatments from the United States.5 The choices of treatment put before patients should involve an adequate and objective appraisal of information, delivered in a patient centred manner backed by information booklets, audio and video tapes, and references to good websites such as those provided by CancerBACUP, the new National electronic Library for Health (NeLH), and the DIPEx database.6-8 Unfortunately even when evidence concerning improved survival or disease free intervals exists, data on quality of life are either missing, sketchy, or not well integrated into the analysis of overall benefit. There is some evidence that doctors do not collect accurate information about symptoms that affect quality of life; consequently patients may be agreeing to different treatments without being aware of their side effects.9 Further, doctors admit to having difficulty integrating the results from formal assessment of quality of life by questionnaires into clinical management, preferring to rely on their own clinical impressions about tolerability or impact of side effects.10 Arguably in some situations, including adjuvant therapy and palliation, these quality of life parameters might be the most important areas of information that a patient requires about likely benefit before consenting to treatment. Patients cannot participate in decision making to their desired extent unless they have the right types of information, given in ways optimal for their own level of understanding. There is a compelling need for training and other interventions to help communication between doctors and patients about the likely and preferred therapeutic goals and priorities of treatment. True patient participation, which may include an expressed preference by the patient to assume a more passive role about the type of information they require, and involvement in decision making is, for most, an unachievable goal unless we see some real improvements in the current system of healthcare delivery. Too many patients are being seen by too few doctors in over burdened clinics with inadequate support staff for meeting adequately the individual information needs of patients with cancer

Logic specification for ACIP recommendations

Currently, Health Information Systems (HIS) \u2013 which can include Health Information Exchanges (HIEs), IIS and Electronic Health Records (EHRs) \u2013 provide healthcare providers with immunization evaluation and forecasting tools designed to automatically determine the recommended childhood immunizations needed when a patient presents for vaccination. These recommendations are developed by the Advisory Committee on Immunization Practices (ACIP). ACIP is a federal advisory committee responsible for providing expert external advice and guidance to the Director of the Centers for Disease Control and Prevention (CDC) and the Secretary of the U.S. Department of Health and Human Services (DHHS) on use of vaccines and related agents for control of vaccine-preventable disease in the United States. Recommendations include age for vaccine administration, number of doses, dosing interval, and precautions and contraindications.After ACIP recommendations are published, technical and clinical subject matter experts (SMEs) work to interpret and integrate them into their evaluation and forecasting engines. An example of an evaluation and forecasting engine is a tool an IIS might use to alert a physician that a presenting child is overdue for a Measles, Mumps, and Rubella (MMR) vaccination. New ACIP schedule changes are currently communicated only through clinical language, in publications like the Morbidity and Mortality Weekly Report (MMWR) and the Epidemiology and Prevention of Vaccine-Preventable Diseases ("The Pink Book"). The translation of that clinical language into technical logic that is processed within evaluation and forecasting engines is a time- consuming and complex process that happens mostly independently within the different HIS. Due to the challenge of interpreting clinically-written ACIP recommendations, clinical decision support (CDS) engine outputs often vary and do not always match the expectations of clinical SMEs.In an effort to harmonize the outcomes of existing HIS CDS tools, the Immunization Information System Support Branch (IISSB) at the CDC funded the Clinical Decision Support for Immunization (CDSi) Project to develop new clinical decision aids4 for each vaccine on the children\u2019s immunization schedule to:\uf0b7 Make it easier to develop and maintain immunization evaluation and forecasting products\uf0b7 Ensure a patient\u2019s immunization status is current, accurate, consistent, and readily available\uf0b7 Increase the accuracy and consistency of immunization evaluation and forecasting\uf0b7 Improve the timeliness of accommodating new and changed ACIP recommendationsThe outcome of enabling the above results is to ensure that patients receive proper immunizations, i.e., \u201cthe right immunization at the right time.\u201d201

Development of a patient-centred intervention to improve knowledge and understanding of antibiotic therapy in secondary care.

Background: We developed a personalised antimicrobial information module co-designed with patients. This study aimed to evaluate the potential impact of this patient-centred intervention on short-term knowledge and understanding of antimicrobial therapy in secondary care. Methods: Thirty previous patients who had received antibiotics in hospital within 12 months were recruited to co-design an intervention to promote patient engagement with infection management. Two workshops, containing five focus-groups were held. These were audio-recorded. Data were analysed using a thematic framework developed deductively based on previous work. Line-by-line coding was performed with new themes added to the framework by two researchers. This was used to inform the development of a patient information module, embedded within an electronic decision support tool (CDSS).The intervention was piloted over a four-week period at Imperial College Healthcare NHS Trust on 30 in-patients. Pre- and post-intervention questionnaires were developed and implemented to assess short term changes in patient knowledge and understanding and provide feedback on the intervention. Data were analysed using SPSS and NVIVO software. Results: Within the workshops, there was consistency in identified themes. The participants agreed upon and co-designed a personalised PDF document that could be integrated into an electronic CDSS to be used by healthcare professionals at the point-of-care. Their aim for the tool was to provide individualised practical information, signpost to reputable information sources, and enhance communication between patients and healthcare professionals.Eighteen out of thirty in-patients consented to participant in the pilot evaluation with 15/18(83%) completing the study. Median (range) age was 66(22-85) years. The majority were male (10/15;66%). Pre-intervention, patients reported desiring further information regarding their infections and antibiotic therapy, including side effects of treatment. Deployment of the intervention improved short term knowledge and understanding of individuals infections and antibiotic management with median (IQR) scores improving from 3(2-5)/13 to 10(6-11)/13. 13/15(87%) reported that they would use the intervention again. Conclusion: A personalised, patient-centred intervention improved understanding and short-term knowledge of infections and antibiotic therapy in participating patients'. Long term impact on attitudes and behaviours post discharge will be further investigated

The evaluation of a breast cancer screening decision aid in the community setting.

Breast cancer screening (BCS) has been recommended to women by healthcare providers as well as professional organizations and non-profit awareness organizations for over four decades. Recently, attention is being paid to quantification of the actual benefits and harms of BCS with mammography. The harms include overdiagnosis, overtreatment and mandate of mammography screening that may not be in alignment with the individual values and preferences of women ages 40-69. This evidence translation project developed a resource for practice that was evaluated by community participants for alignment with personal value and preference-based educational needs about BCS. This project piloted a clinical practice decision aid (DA), called My Personal Decision (MPD), directly to a community-based convenience sample of women ages 40-69. Through a small sample of women, a change in knowledge about the harms and benefits of BCS was demonstrated. Evaluation feedback from the participants before and after use of the tool confirmed that MPD was helpful and enhanced preparedness for BCS decision-making. Provision of evidence-based information directly to women in the community setting was well received and perceived as valuable in the screening decision-making process in this context. Understanding of evidence-based information is a fundamental element in the empowerment of the decision maker with the goal of informed decision-making

Competent children?: minors’ consent to health care treatment and research

This paper concentrates on controversies about children's consent, and reviews how children's changing status as competent decision makers about healthcare and research has gradually gained greater respect. Criteria for competence have moved from age towards individual children's experience and understanding. Uncertain and shifting concepts of competence and its identification with adulthood and childhood are examined, together with levels of decision-making and models for assessing children's competence. Risks and uncertainties, methods of calculating the frequency and severity of risks, the concept of 'therapeutic research' and problems of expanding consent beyond its remit are considered. The paper ends by considering how strengths and limitations in children's status and capacities to consent can be mirrored in researchers' and practitioners' own status and capacities. Examples are drawn from empirical research studies about decision-making in healthcare and research involving children in the UK

An integrated framework to classify healthcare virtual communities

Healthcare (HC) strives to improve service quality through its cost-effective social computing strategy. However, sudden rise in the count of virtual community of practices (VCoPs) introduced many choices for physicians; As a result, it is not surprising to observe current literature reporting lack of study to investigate ideas integration within and between VCoPs. VCoPs need to be categorized for HC physicians so they will be able to pin-point effective a VC to attain assistance from. This paper is one of the first investigative studies, in HC sector, that proposed a framework to classify and pin-point appropriate VCoPs, for physicians, after it reviewed and analyzed traditional and up-to-date theoretical, empirical and case study literature in the area of social computing, knowledge management (KM) and VCoPs. The implementation of this framework pinpointed professional VCoPs as most appropriate for physicians based on strict requirements, i.e. closed physician communities holding many participants, which are older than 5 years with high boundary crossing. This framework is also a “one-size-fit-all” formula to build an organizational VCoP, utilizable by other business sectors