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Patients' Perception of Privacy of Personal Data, Shared in Online Communities: Are We in the Presence of a Paradox?
Abstract
Virtual online communities help people in coping with complex health issues, such as those present in patients suffering chronic diseases. Further research is required in order to clarify the impact of sharing of personal experiences on the perception of privacy and confidentiality by patients. We studied the case of Carenity an online social network created in France in 2011 bringing together 300,000 patients across Europe, and selected patients suffering Multiple Sclerosis. We conducted an exploratory-descriptive survey, and 253 patients completed an online questionnaire. Most participants did not consider that their privacy was threatened when sharing their personal experiences and data associated with their health condition. As common sense prevents one to share information to strangers to ensure privacy, such paradox may be explained by new strategies to face challenges imposed by chronic conditions disease, where sharing personal experiences may be considered as a complementary source of social support by patients.
... The study population included participants from the Carenity cancer community. Carenity is an online patient community for people with chronic conditions [31,32]. Patients and caregivers can share their experiences in more than 1200 disease-specific communities, exchange information on the disease and request advice and information. ...
Background
New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented.
Objective
This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management.
Methods
This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed.
Results
Of 82 patients included (mean age: 56.9 years, 95% CI 54.2-59.6; 46 [56%] male; 34 [41%] with lung cancer), 62 (76%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66%), oncologists (53/82, 65%), and hospital nurses (50/82, 61%). Around half (45/82, 55%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient’s initiative (34/53, 64%). Discussions occurred primarily during follow-up visits (40/62, 65%), when adverse events occurred (30/62, 48%), and at treatment initiation (27/62, 32%). The most discussed dimensions were symptoms (48/62, 77%) and physical well-being (43/62, 69%). With respect to expectations, 54/82 (66%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77%) and when treatment was initiated (75/82, 92%) or changed (68/82, 83%). All HRQoL dimensions were considered important to discuss.
Conclusions
With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed.
... It is not surprising that issues of privacy are directly related to patient satisfaction (42,43). This area too needs further detailed interview-based research, as there is a difference of perception in relation to the concept of privacy as it is multifactorial and differs between cultures (42,44,45). It may be suggested that the structure of the OPC should be changed in a way that consultation rooms are away from the waiting area and doors should be soundproof. ...
Outpatient clinics are an important part of chronic disease management, including that of celiac disease. During the coronavirus disease 2019 (COVID-19) global pandemic, telephone and online video consultations with health care professionals have substantially increased. This study aimed to explore the experience and opinions of adults, with celiac disease, toward face-to-face clinic appointments and alternatives, such as telehealth. Semistructured qualitative interviews with 37 patients were undertaken (75% White Caucasians, 25% South Asians; 29 patients were not adhering to the gluten-free diet). Interviews were recorded, transcribed, and analyzed by NVivo. Frequently reported issues with face-to-face appointments included travel and car parking costs, needing to take time off work, and frequent changes to appointment time. In addition, South Asian patients highlighted issues with linguistics barriers. Telephone consultations were considered acceptable and practical by the majority of patients based on ease and convenience. Online video consultations were favored by just 9 patients, however it is acknowledged that since the COVID-19 pandemic, there has been a greater exposure to this type of technology. These patient experiences can inform health care service development and are not biased by external health concerns connected with in-person visits during the pandemic.
... The survey was conducted in France, Germany, Italy, Spain, the United Kingdom, and the United States between November 10, 2017, and February 28, 2018, using an established online approach [30][31][32]. Patients or caregivers of patients with spasticity who were members of the Carenity platform were invited by email to complete a questionnaire, presented in the local language, translated by a specialized agency and reviewed by local Carenity community managers. The study methodology and questionnaire were validated by 3 neurologists (from Canada, Spain, and the United States) and 1 rehabilitation physician (from the United States). ...
Background
Patient- and caregiver-reported data are lacking on the burden of spasticity, and the impact of botulinum neurotoxin type A (BoNT-A) treatment for this condition, on patients' daily lives. As recommended in recent guidance from the US Food and Drug Administration, online patient communities can represent a platform from which to gather specific information outside of a clinical trial setting on the burden of conditions experienced by patients and caregivers and their views on treatment options in order to inform evidence-based medicine and drug development.
Objective
The objective of our study is to characterize spasticity symptoms and their associated burdens on Western European and US patients and caregivers in the realms of work, daily activities, quality of life (QoL), as well as the positive and negative impacts of treatment with BoNT-A (cost, time, QoL) using Carenity, an international online community for people with chronic health conditions.
Methods
We performed a noninterventional, multinational survey. Eligible participants were 18 years old or older and had, or had cared for, someone with spasticity who had been treated with BoNT-A for at least 1 year. Patients and caregivers were asked to complete an internet-based survey via Carenity; caregivers reported their own answers and answered on behalf of their patients. Questions included the burden of spasticity on the ability to work, functioning, daily-living activities, and QoL, the impact of BoNT A therapy on patients' lives, and the potential benefits of fewer injections.
Results
There were 615 respondents (427 patients and 188 caregivers). The mean age of patients and caregivers was 41.7 years and 38.6 years, respectively, and the most commonly reported cause of spasticity was multiple sclerosis. Caregivers were most often the parents (76/188, 40%) or another family member (51/188, 27%) of their patients. Spasticity had a clear impact on patients' and caregivers' lives, including the ability to work and injection costs. For patients, spasticity caused difficulties with activities of daily living and reduced QoL indices. The median number of BoNT-A injections was 4 times per year, and 92% (393/427) of patients reported that treatment improved their overall satisfaction with life. Regarding the BoNT-A injection burden, the greatest patient-reported challenges were the cost and availability of timely appointments. Overall, 86% (368/427) of patients believed that a reduced injection frequency would be beneficial. Caregivers answering for their patients gave largely similar responses to those reported by patients.
Conclusions
Spasticity has a negative impact on both patients' and caregivers' lives. All respondents reported that BoNT A treatment improved their lives, despite the associated challenges. Patients believed that reducing the frequency of BoNT-A injections could alleviate practical issues associated with treatment, implying that a longer-acting BoNT-A injection would be well received.
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