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This chapter will identify readily accessible existing sources of public data. Thechallenges of using that data are considerable and require extensive time to ensure validity for reporting purposes. Summaries of data field selection and data wrangling requirements are presented in conjunction with data aggregation strategies.

Chronic illnesses often go unnoticed mainly due to their invisibility and lack of understanding both at home and in the workplace. In this chapter, I use an autoethnographic approach to engage with my “emotionally charged” lived experiences of living and working with a stigmatized chronic illness – irritable bowel syndrome (IBS) – in a highly patriarchal Pashtun society where women are expected to perform various social roles despite of illness and are often silenced to male domination. IBS is a functional gastrointestinal disorder characterized by abdominal pain, abnormal bowel function, and bloating, in the absence of any structural abnormalities, and has a significant impact on one’s life. As I navigate through my experiences of suffering from a chronic illness and the emotional labor involved therein, I shed light on the challenges I face as a woman in managing work and life and as I silence my pain and emotions to fit into the roles of a “professional” academic, a “good” wife, a “good” daughter, a “good” sister-in-law, a “good” daughter-in-law, and so forth. I have used both the lens of stigma to reflect my sufferings and normalization to demonstrate my resilience and (re)adjustment to the new life. In doing so, pain and emotions do leak out during intense situations but silencing chronic illness is mostly strategic as it protects us from being excluded, marginalized, and stigmatzed both at work and home.

The process of chronic pain (CP) and strategies is to improve the patient’s health and well-being. CP is a frequent medical problem that presents a major challenge to healthcare providers because of its complex natural history, imprecise aetiology, and inadequate response to pharmacological treatment. Although different definitions exist it is widely accepted that CP is an ongoing pain that lasts more than 3 months or that persists longer than the reasonably expected healing time for the involved tissues. Also, it is acknowledged that its treatment is much different than the treatment for acute pain. When addressing a person with CP, one should always keep in mind that pain is much more about the individual than the underlying medical condition. Every person is different, and healthcare providers should take a tailor-made approach to managing their pain. This is the only way to ensure good results in pain treatment. Treatment goals should be discussed and adapted to the patient profile. It is fundamental to have clear goals from the beginning and to ensure these are realistic, individualized, and measurable. Effective treatment for CP is only achieved through a holistic framework in which the patient’s well-being is the first concern and an interdisciplinary and societal approach is implemented from the first day.

Synthetic patient data produced by Synthea was described in Chapter 6. That data is used to create a baseline for all patients, palliative patients, and deceased palliative patients. Distributions of comorbidities across the patient groups are examined and demographic characteristics. The factors used in palliative care groupings are presented with the synthesized data fields used. The size of the palliative population is again estimated to establish validity.

The authors examine whether or not applicants and recipients of federal disability insurance (DI) inflate their self-assessed health (SAH) problems relative to others. To do this, the authors employ a technique which uses anchoring vignettes. This approach allows them to examine how various cohorts of the population interpret survey questions associated with subjective self-assessments of health. The results of the analysis suggest that DI participants do inflate the severity of a given health problem, but by a small but significant degree. This tendency to exaggerate the severity of disability problems is much more apparent among those with more education (especially those with a college degree). In contrast, racial minorities tend to underestimate severity ratings for a given disability vignette when compared to their white peers.

Characteristics that impact the levels of palliative care are introduced. Patients with the potential to be classified as palliative may be overlooked or simply so not seek medical attention. The population is much higher than those being treated on an annual basis. Data from the American Community Survey (ACS) and the Behavioral Risk Factor Surveillance System (BRFSS) are applied to the characteristics of palliative care and used to estimate the size of the palliative population in the United States (US).

Incorporating the voice of older adults into all phases of research has the potential to make findings more relevant and impactful. Beyond the direct benefit, researchers have an ethical obligation to elicit the contributions of older adults into their work. Recently, organizations such as the Patient Centered Outcomes Research Institute in the United States, the Canadian Institutes of Health Research and the National Institute of Health Research in the United Kingdom have stepped up to accelerate the incorporation of public and patient voice into research, resulting in innovative engagement strategies for involving stakeholders, including older adults in research. However, those who are physically and mentally capable are more often included in research than those with multiple chronic conditions or living with disabilities. The ability to incorporate older adult voice into research is possible and has provided tangible benefits to researchers. Older adults have expertise based on their lived experiences that can provide invaluable insights on how to conduct research with real-world applications. Programmes such as the Bureau of Sages have worked to implement and disseminate best practices and guidelines for incorporating the voice of older adults into research. Principles for engaging older adults include flexibility, mutual engagement of the older adult and the researcher, time for rapport building and partner development and increased focus on accessibility. By working to understand these principles and overcome challenges to incorporating older adult voice into research, research will be more meaningful and relevant to the public, and will inherently include a focus on translation of research into practice.

This chapter more clearly identifies the distinction between Electronic Health Record (EHR) and Electronic Medical Record (EMR), and states their value in obtaining individual-level data. Synthetic medical records may be used as a surrogate for EHR data in order to ensure digital data privacy is maintained during the development of the LHS. Synthea is an open-source simulation tool available through GitHub.¹ Extensive descriptive analysis of synthesized data is provided as a foundation for the analysis in Chapter 7.