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From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients.

ABSTRACT: BACKGROUND:Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative. OBJECTIVE:The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care. METHODS:Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory-autonomy, relatedness, and competence-at the outset. RESULTS:Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them. CONCLUSIONS:Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.

SUBMITTER: Scott Duncan T

PROVIDER: S-EPMC6714498 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients.

Scott Duncan Therese T Riggare Sara S Koch Sabine S Sharp Lena L Hägglund Maria M

Journal of medical Internet research 20190815 8

<h4>Background</h4>Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own he ...[more]

PMID: 31418421

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Project description:BACKGROUND:Norway, like other European countries, has a growing refugee population. Upon arrival to Norway, refugees and asylum seekers need to learn about Norwegian society and social services such as healthcare. Despite various programs and assistance, they face numerous challenges using the healthcare system. Understanding the healthcare experiences of Ethiopian refugees and asylum seekers may improve how services such as informational sessions and delivery of medical care are provided. This qualitative study seeks to describe the health-related experiences of Ethiopians who have sought asylum in Norway and shed light on potential barriers to care. METHODS:Individual interviews were conducted with ten Ethiopian refugees and asylum seekers in Norway. Thematic analysis was used to understand the broader context of refugee resettlement and how this experience influences participants' health experiences and health seeking behaviors. RESULTS:We identified three main themes that played a role in participants' health and healthcare experiences. Participants described how 'living in limbo' during their application for residency took a mental toll, the difficulties they had 'using the healthcare system', and the role 'interpersonal factors' had on their experiences. While applying for asylum, participants felt consumed by the process and were affected by the lack of structure in their lives, the conditions in the reception center, and perceived inadequate healthcare. Participants perceived a change in access to services before and after they had been granted residency. Participants learned about the healthcare system both through official information sessions and social networks. Doctor-patient communication and interpersonal factors such as a sense of feeling valued, language, and discrimination had a large impact on perceived quality of care. CONCLUSIONS:Ethiopian refugees and asylum seekers face numerous challenges accessing, using, and interacting with Norway's healthcare system. Contextualizing these challenges within the asylum seeking process may help policy makers better understand, and therefore address, these challenges. Interventions offered at reception centers and in health worker trainings may improve healthcare experiences for this and similar populations.

Project description:BackgroundDespite its long history, dissociation remains under-recognised clinically, partly due to difficulties identifying dissociative symptoms. Qualitative research may support its recognition by providing a lived experience perspective. In non-affective psychosis, identification of dissociation may be particularly important given that such experiences have been implicated its development and maintenance. Therefore, this study aimed to understand in the context of psychosis: what it is like to experience dissociation; the impact dissociation might have; what factors begin, maintain or end dissociative experiences; and what beliefs people hold about dissociation.MethodsQualitative interviews were carried out with twelve NHS patients with non-affective psychosis diagnoses and experience of dissociation. Data were analysed using Thematic Analysis.ResultsDissociation involves subjective strangeness, unreality, disconnection, and shifts in perception. It impacts on mental health (including psychotic experiences), daily functioning, emotional connection, and can lead to social withdrawal. Stress, fatigue, and excessive internal focus may be involved in development and maintenance. Participants found it very difficult to describe the experience of dissociation, and, as a result, often did not mention it to others. Even when shared, interviewees reported that their descriptions were misunderstood and therefore they did not receive information or support specific to dissociation. The consensus was that experiences of dissociation are negative, but that understanding them better helped to enable coping.ConclusionsThe core subjective experience of dissociation appears to be a felt sense of anomaly (FSA), and we therefore suggest clinicians proactively enquire about such experiences. Dissociation is distressing, and has multiple impacts, but can easily be overlooked due to difficulties describing it and behavioural similarities to negative psychotic symptoms such as withdrawal.

Project description:Introduction: Uncertainty is omnipresent in cancer care, including the ambiguity of diagnostic tests, efficacy and side effects of treatments, and/or patients' long-term prognosis. During second opinion consultations, uncertainty may be particularly tangible: doubts and uncertainty may drive patients to seek more information and request a second opinion, whereas the second opinion in turn may also affect patients' level of uncertainty. Providers are tasked to clearly discuss all of these uncertainties with patients who may feel overwhelmed by it. The aim of this study was to explore how oncologists communicate about uncertainty during second opinion consultations in medical oncology. Methods: We performed a secondary qualitative analysis of audio-recorded consultations collected in a prospective study among cancer patients (N = 69) who sought a second opinion in medical oncology. We purposively selected 12 audio-recorded second opinion consultations. Any communication about uncertainty by the oncologist was double coded by two researchers and an inductive analytic approach was chosen to allow for novel insights to arise. Results: Seven approaches in which oncologists conveyed or addressed uncertainty were identified: (1) specifying the degree of uncertainty, (2) explaining reasons of uncertainty, (3) providing personalized estimates of uncertainty to patients, (4) downplaying or magnifying uncertainty, (5) reducing or counterbalancing uncertainty, and (6) providing support to facilitate patients in coping with uncertainty. Moreover, oncologists varied in their (7) choice of words/language to convey uncertainty (i.e., "I" vs. "we"; level of explicitness). Discussion: This study identified various approaches of how oncologists communicated uncertain issues during second opinion consultations. These different approaches could affect patients' perception of uncertainty, emotions provoked by it, and possibly even patients' behavior. For example, by minimizing uncertainty, oncologists may (un)consciously steer patients toward specific medical decisions). Future research is needed to examine how these different ways of communicating about uncertainty affect patients. This could also facilitate a discussion about the desirability of certain communication strategies. Eventually, practical and evidence-based guidance needs to be developed for clinicians to optimally inform patients about uncertain issues and support patients in dealing with these.

Project description:BackgroundCommercial data brokers have amassed large collections of primary care patient data in proprietary databases. Our study objective was to critically analyze how entities involved in the collection and use of these records construct the value of these proprietary databases. We also discuss the implications of the collection and use of these databases.MethodsWe conducted a critical qualitative content analysis using publicly available documents describing the creation and use of proprietary databases containing Canadian primary care patient data. We identified relevant commercial data brokers, as well as entities involved in collecting data or in using data from these databases. We sampled documents associated with these entities that described any aspect of the collection, processing, and use of the proprietary databases. We extracted data from each document using a structured data tool. We conducted an interpretive thematic content analysis by inductively coding documents and the extracted data.ResultsWe analyzed 25 documents produced between 2013 and 2021. These documents were largely directed at the pharmaceutical industry, as well as shareholders, academics, and governments. The documents constructed the value of the proprietary databases by describing extensive, intimate, detailed patient-level data holdings. They provided examples of how the databases could be used by pharmaceutical companies for regulatory approval, marketing and understanding physician behaviour. The documents constructed the value of these data more broadly by claiming to improve health for patients, while also addressing risks to privacy. Some documents referred to the trade-offs between patient privacy and data utility, which suggests these considerations may be in tension.ConclusionDocuments in our analysis positioned the proprietary databases as socially legitimate and valuable, particularly to pharmaceutical companies. The databases, however, may pose risks to patient privacy and contribute to problematic drug promotion. Solutions include expanding public data repositories with appropriate governance and external regulatory oversight.

Project description:BackgroundPerinatal psychological distress adversely impacts the well-being and social adjustment of parents and their children. Expectant parents who have migrated may be at higher risk for perinatal psychological distress due to various migration-specific stressors and healthcare service barriers. Limited studies have examined the perceived determinants of perinatal distress in immigrant parents, particularly men. This study explored first and second-generation immigrant parents' lived experiences of social stressors and facilitators of perinatal psychological well-being.MethodsParticipants were recruited by convenience and purposive sampling as part of a larger study. Semi-structured interviews were conducted virtually with first and second-generation immigrant women and men in Quebec, Canada. An inductive thematic analysis was performed.ResultsSixteen women (age = 34.8 ± 3.7 years) and ten men (age = 35.1 ± 4.9 years) from various ethnic backgrounds participated in the study at 7.4 ± 0.73 and 7.5 ± 0.72 months postpartum, respectively. Three themes were identified: (1) cultural pressures (cultural differences in parenting, gender-related cultural pressures, health and baby-related practices), (2) health and social service access (social benefits and resources, and systemic barriers in health care), and (3) discrimination (physical appearance or parental-related discrimination, gender-related discrimination, ethnic-related discrimination). First-generation immigrant parents reported greater acculturative stress (i.e. mental health stigma, health care access) and ethnic discrimination concerns related to their distress. Among men, barriers include feeling as though the paternal role was devalued by society and not receiving consideration by health care.ConclusionsOur results highlight different social factors of perinatal well-being perceived by men and women from various ethnic and immigration backgrounds during the perinatal period. Perceived factors include macro-level factors, such as a country's social climate, health and social policies and services, and social aspects of acculturative stress. Our findings suggest the need for continued efforts to challenge and eliminate discriminatory practices. Interventions and resources directed at first-generation immigrant parents should be bolstered. Understanding what parents perceive to facilitate or hinder their psychological well-being can help inform the development of tailored evidence-based programs and policies to better meet the mental health needs of Canadians and reduce gender disparities in the treatment of perinatal distress.

Project description:Patients are increasingly asking for their health data. Yet, little is known about what motivates patients to engage with the electronic health record (EHR). Furthermore, quality-focused mechanisms for patients to comment about their records are lacking.We aimed to learn more about patient experiences with reading and providing feedback on their visit notes.We developed a patient feedback tool linked to OpenNotes as part of a pilot quality improvement initiative focused on patient engagement. Patients who had appointments with members of 2 primary care teams piloting the program between August 2014-2015 were eligible to participate. We asked patients what they liked about reading notes and about using a feedback tool and analyzed all patient reports submitted during the pilot period. Two researchers coded the qualitative responses (κ=.74).Patients and care partners submitted 260 reports. Among these, 98.5% (256/260) of reports indicated that the reporting tool was valuable, and 68.8% (179/260) highlighted what patients liked about reading notes and the OpenNotes patient reporting tool process. We identified 4 themes describing what patients value about note content: confirm and remember next steps, quicker access and results, positive emotions, and sharing information with care partners; and 4 themes about both patients' use of notes and the feedback tool: accuracy and correcting mistakes, partnership and engagement, bidirectional communication and enhanced education, and importance of feedback.Patients and care partners who read notes and submitted feedback reported greater engagement and the desire to help clinicians improve note accuracy. Aspects of what patients like about using both notes as well as a feedback tool highlight personal, relational, and safety benefits. Future efforts to engage patients through the EHR may be guided by what patients value, offering opportunities to strengthen care partnerships between patients and clinicians.

Project description:BackgroundIncorporation of the patient voice is urgently needed in a broad array of health care settings, but it is particularly lacking in the obstetrical literature. Systematically derived information about patients' experience with hypertensive disorders of pregnancy (HDP), most notably preeclampsia, is necessary to improve patient-provider communication and ultimately inform patient-centered care and research. We sought to examine the information needs and experiences of individuals with pregnancies complicated by hypertensive disorders.MethodsWe conducted a qualitative content analysis of narrative-responses to an open-ended question from the Preeclampsia Registry (TPR), an online registry hosted by the Preeclampsia Foundation. Individuals were invited to enroll in TPR via social media, web searches, and newsletters. We restricted our analysis to participants who self-reported a history of HDP and responded to the open-ended question, "Is there any information that you could have had at the time of this pregnancy that would have been helpful?". Available responses from July 2013 to March 2017 were included. Narrative responses were coded, reconciled, and thematically analyzed by multiple coders using an inductive approach. Our main outcome measures included participants' expressed needs and additional concerns with respect to their HDP pregnancy.ResultsOf 3202 enrolled participants, 1850 completed the survey and self-reported having at least one pregnancy complicated by HDP, of which 895 (48.4%) responded to the open-ended question. Participants delivered in the United States (83%) and 27 other countries. Compared to non-responders, responders reported more severe HDP phenotypes and adverse offspring outcomes. We identified three principal themes from responses: patient-identified needs, management and counseling, and potential action. Responses revealed that participants' baseline understanding of HDP, including symptoms, management, therapeutic strategies, and postpartum complications, was demonstrably lacking. Responders strongly desired improved counseling so that both they and their providers could collaboratively diagnose, appropriately manage, and robustly and continuously communicate to facilitate a partnership to address any HDP complications.ConclusionsParticipants' responses regarding their HDP experience provide indispensable insight into the patient's perspectives. Our study suggests that improved education regarding possible HDP complications and transparency about the consideration of HDP and its associated outcomes during an evaluation are needed, and efforts to implement these strategies should be sought.Trial registrationThe Preeclampsia Registry: NCT02020174.

Project description:OBJECTIVE:To analyse the role and meaning of health information in individuals' experiences with either breast, colorectal or prostate cancer in order to better understand unmet information needs of people with a cancer diagnosis. DESIGN:This is a secondary analysis of data from a qualitative interview study including narrative interviews and maximum variation sampling. A thematic analysis was conducted, followed by an in-depth analysis based on the principles of grounded theory. SETTING:Interviewees were sought across Germany through self-help organisations, primary care clinics, rehabilitation facilities, physicians and other healthcare professionals to develop cancer modules for the website krankheitserfahrungen.de (illness experiences.de). PARTICIPANTS:Women with a diagnosis of breast cancer, individuals with a diagnosis of colorectal cancer and men with a diagnosis of prostate cancer. RESULTS:The meaning and role of information in the illness experiences were clearly associated with gaining control in a seemingly uncontrollable situation in which others -people, the disease- take over. Four categories characterise the ways in which information helped interviewees to regain a sense of control following a diagnosis of cancer: 'becoming confident in one's treatment decision', 'taking responsibility for one's situation', 'understanding the consequences of the disease and treatment for one's life', and 'dealing with fear'. There was, however, always a fine line between information seeking and becoming overwhelmed by information. CONCLUSIONS:Information needs to be understood as a management tool for handling the disease and its (potential) consequences. Patients' unmet needs for information might not be easily solved by a simple increase in the amount of information because emotional support and respect for patient autonomy might also play a role. The evaluation of one's own information behaviour and the information received is closely linked to how the illness unfolds. This makes it challenging to document unmet information needs and satisfaction with information independent of an individual's illness trajectory over time.

Dataset Information

From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients.

Publications

From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients.

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