Dataset Information

Factors in Patient Empowerment: A Survey of an Online Patient Research Network.

ABSTRACT:

Background

Providers and healthcare organizations have begun recognizing the importance of patient empowerment as a driver of patient-centered care. Unfortunately, most studies have investigated empowerment with single diseases. Identifying factors of empowerment across conditions and populations would enable a greater understanding of this construct.

Objective

The purpose of this study was to understand empowerment in relation to health information-seeking, interactions with providers and peers, and healthcare access in chronic disease patients. This study also sought to identify key empowerment factors and their association with patient characteristics.

Methods

Participants were recruited through PatientsLikeMe, an online research platform where patients share their personal and medical history data. Patients completed an online survey that assessed self-reported health behavior (e.g. knowledge-seeking, experiences with healthcare providers, and peer interactions) and healthcare access. An exploratory factor analysis identified key empowerment domains. Domain level sum scores and sum of all domains (total score) were compared across patient characteristics and diseases.

Results

Overall, 3988 participants were included in the study, with the majority actively involved in their healthcare, but many cited difficulties with matching their treatment goals with those of their physician (34 %) and spending sufficient time with the physician (36 %). Factor analysis identified two domains-Positive Patient-Provider Interaction, and Knowledge and Personal Control-that explained >60 % of the overall variance in the observed variables. Mean total empowerment scores for patients with a primary complaint of Parkinson's disease (61.8) and multiple sclerosis (60.3) were significantly greater than fibromyalgia (55.3) and chronic fatigue syndrome (54.8). Patients who were older, male, more educated, and insured also reported significantly greater levels of empowerment.

Conclusions

The two domains of empowerment identified in this study are consistent with previous studies, but the differences in empowerment levels across diseases suggest a need for further studies on disease-related attributes of empowerment. Future research should examine the pathways for empowerment, as well as the relationship between empowerment domains and clinical outcomes.

SUBMITTER: Chiauzzi E

PROVIDER: S-EPMC5107186 | biostudies-literature | 2016 Dec

REPOSITORIES: biostudies-literature

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Publications

Factors in Patient Empowerment: A Survey of an Online Patient Research Network.

Chiauzzi Emil E DasMahapatra Pronabesh P Cochin Elisenda E Bunce Mikele M Khoury Raya R Dave Purav P

The patient 20161201 6

<h4>Background</h4>Providers and healthcare organizations have begun recognizing the importance of patient empowerment as a driver of patient-centered care. Unfortunately, most studies have investigated empowerment with single diseases. Identifying factors of empowerment across conditions and populations would enable a greater understanding of this construct.<h4>Objective</h4>The purpose of this study was to understand empowerment in relation to health information-seeking, interactions with prov ...[more]

PMID: 27155887

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Project description:BackgroundThe use of online resources has changed how people manage health care processes. Patients seek information about health conditions, guidance in treatment, and support from peers online, complementary to traditional health care trajectories. Online communities have the potential to contribute to the quality of care by increasing patient empowerment; however, there is a gap in research regarding in what way online communities contribute to patient empowerment.ObjectiveWe synthesized research regarding how online communities contribute to patient empowerment to address the research question "In what ways can participation in online communities support patient empowerment?" by studying how patient empowerment is operationalized in different studies. The definition of patient empowerment used in this paper is enablement for people to develop mastery over actions and control over decisions that influence their lives. The mastery is both through processes and outcomes of the development.MethodsA systematic review was conducted by searching in the following databases: Scopus, ACM Digital Library, EBSCO (CINAHL and MEDLINE), PubMed, and Web of Science. In total, there were 1187 papers after excluding duplicates, and through selection processes using an analytical framework with definitions of patient empowerment and related concepts, 33 peer-reviewed papers were included.ResultsFindings indicated that online communities support patient empowerment both as a process and as outcomes of these processes. Additionally, it was seen as a complement to traditional health care and encouragement for health care professionals to have a more positive attitude toward patients' usage. There was a mix between deductive (19/33, 58%), inductive (11/33, 33%), and a mixed approach (3/33, 9%) of studying patient empowerment in various forms. The online communities in most papers (21/33, 64%) were well-established and represented patients' initiatives.ConclusionsThere is a need to include professionals' perspectives regarding how health care can embrace patient empowerment through online communities. This systematic review's main contribution is the proposal of a new framework and conceptualization of how patient empowerment in online communities can be understood from different hierarchical levels.

Project description:BackgroundOnline communities for patients with chronic conditions are becoming healthcare providers. They gather to offer support and services, and to become a collective oppositional force. We found, however, that these communities and their collective power are rarely studied in the health services management literature, which focuses more on the empowering practices of healthcare professionals or patient participation. The aim of this study is thus to build a better understanding of the nature of patients' collective empowerment and the processes underlying it. We carry out two exploratory qualitative studies to examine the motivations that drive chronically ill patients to engage in an individual and then collective empowerment process.MethodsThe first qualitative study involves four semi-structured interviews with experts. The second is a netnographic study carried out over a year on an online forum for people with thyroid disease. The latter has two phases: an immersion phase followed by one that traces the path of 21 forum members from their first message to their recognition as active members or even forum moderators. The data are analyzed through thematic and lexical content analyses.ResultsWe were able to identify the different stages of the collective patient empowerment process and the criteria for progression though this process. Specifically, the first study sheds light on the unmet individual and collective needs of the patients. The second emphasizes the essential role of active contributors and their impact on the growth and power of the community.ConclusionsThis study looks at patient communities as a self-contained system and identifies the stages of collective empowerment that match the organization's declared priorities: community, collaborative, productive, and societal. These results should help health professionals better take these online communities into account in patient care, improving their practices, and carrying out their policies. We call for future research into collective empowerment and its influence on patient behavior, the transformation of healthcare institutions, and the health services market.

Project description:OBJECTIVES:The Scleroderma Patient-centered Intervention Network (SPIN) Cohort uses the cohort multiple randomised controlled trial design to embed trials of online self-care interventions for people living with systemic sclerosis (SSc; scleroderma). To offer interventions to patients interested in using them, participants complete signalling items that query about the likelihood that patients would agree to participate in nine different hypothetical online programmes addressing common SSc-related problems. It is not known what factors influence patient-reported interest in participating in a particular online intervention and if intervention-specific signalling questions provide unique information or replicate broader characteristics, such as overall willingness to participate or self-efficacy. This study assessed factors that explain responses to intervention-specific signalling items. DESIGN:Cross-sectional survey. SETTING:SPIN Cohort participants enrolled at 42 centres from Canada, the USA, the UK, France, Spain and Mexico who completed study questionnaires from March 2014 to January 2018 were included. MEASURES:Demographic and disease characteristics, self-efficacy and symptoms related to each specific intervention were completed in addition to signalling items. General likelihood of using interventions was calculating by taking the mean score of the remaining signalling questions. PARTICIPANTS:1060 participants with complete baseline data were included in the analyses. RESULTS:For all individual signalling questions, controlling for other variables, the mean of the remaining signalling questions was the strongest predictor (standardised regression coefficient ? from 0.61 (sleep) to 0.80 (self-management)). Smaller, but statistically significant, associations were found with the symptom associated with the respective signalling question and with general self-efficacy for 7 of 9 signalling questions. CONCLUSIONS:The main factor associated with patients' interest in participating in a disease-specific online self-care intervention is their general interest in participating in online interventions. Factors that may influence this general interest should be explored and taken into consideration when inviting patients to try online interventions.

Project description:BackgroundAlthough patient data is available through electronic portals, little information exists about the benefits and/or challenges of providing patients with online access to their radiology images.ObjectiveThe aims of this quality improvement project were to understand patient attitudes toward being able to view their radiology images online and determine how information should be presented to ensure the images are helpful to the patients, rather than causing confusion and anxiety.MethodsAn online survey of consumers was conducted to evaluate attitudes toward online access to personal radiological images.ResultsA total of 105 responses were received from 686 community members (15.3%). Of 105 consumers, 94 (89.5%) reported a desire to have access to the radiology images within their online patient portal; 86.7% (91/105) believed it would help them better understand their medical conditions and 81.0% (85/105) said this would help them feel more in control of their care. Most respondents (74/105, 70.5%) said it would help them feel reassured that their doctor was doing the right thing, and 63.8% (67/105) said it would increase their level of trust in their doctor. Among surveyed patients, 78.1% (82/105) valued viewing their radiology images online, while 92.4% (97/105) valued their online radiology reports. Most patients (69/105, 65.7%) wished to discuss their results with their ordering clinician, 29.5% (31/105) wished to discuss with their interpreting radiologist, and 3.8% (4/105) wished to share their images on social media. The biggest potential concern among 23.8% (25/105) was that the images would be confusing.ConclusionsA large majority of surveyed patients desired the ability to view their radiology images online and anticipated many benefits and few risks. Health care organizations with electronic health records and online patient portals should consider augmenting their existing portals with this highly desired feature. To avoid the biggest patient concern, radiology reports should accompany images. Patients wanted to discuss their results with their ordering physician and their interpreting radiologist. Some even would like to share results on social media. Further research on the actual experience with such a tool will be needed.

Project description:ObjectivesA survey conducted by the Spanish Lupus Federation (FELUPUS) shows the results on perceptions and experiences of the people who live with lupus in Spain. The information was gathered anonymously from May 21st to June 30th, 2020. The aim of the study was to monitor the impact of the disease on quality of life, as well as to measure the impact of organ damage in lupus patients.MethodsA national survey was conducted among people with lupus living in Spain who belong to the Spanish Lupus Patient Association (FELUPUS). Online interviews of approximately 25 min were completed. The information was gathered anonymously from May 21st to June 30th, 2020.ResultsOne thousand two hundred sixty-three interviews were completed. 92% had a diagnosis of Systemic Lupus Erythematosus (SLE) and 8% of Cutaneous Lupus Erythematosus (CLE); 95% of the patients surveyed were female. Most of the patients claimed they stay up late, exercising and work/study were the most limited actions due to the disease. 73% of patients considered that there was little knowledge of the disease by society and at the time of diagnosis, the patient's level of knowledge about lupus was low in 92% of them. Regarding organ damage, many patients did not understand the concept of chronicity and irreversibility of the term, relating it erroneously to acute symptoms like fatigue (38%), joint pain (47%) and even to the presence of cutaneous symptoms such as the presence of oral ulcers (17%).ConclusionsThe survey highlighted the need for disease awareness campaigns, greater involvement of healthcare professionals and the need to provide more information to lupus patients from the time of diagnosis. Nationally and to our knowledge, this is the survey with the largest number of participants (N = 1263) conducted in patients with lupus. Key Points •A national survey was conducted among people with lupus living in Spain and belonging to patient associations in Spain (FELUPUS). •Nationally and to our knowledge, this is the survey with the largest number of participants (N = 1263) conducted in patients with lupus. •Most of the patients claimed they stay up late, exercising and work/study were the most limited actions due to the disease. •73% of patients considered that there is little knowledge of the disease by society and at the time of diagnosis, the patient's level of knowledge about lupus was low in 92% of them.

Project description:Modern healthcare is becoming increasingly technologized, knowledge-intensive, and specialized, which has consequences for communication between patients and practitioners in clinical encounters. Health information is increasingly accessible to patients through online resources. The objective of this paper is to provide an overview of existing studies that address how patients communicate with practitioners about online health information and to identify the key topics raised in these studies. With the concept of eHealth literacy as its point of departure, this paper specifically highlights the eHealth literacy topic of how patients comprehend, appraise and communicate online health information before and during the encounter with the healthcare professionals. In the literature search, we focus on qualitative studies that consider patients' and/or practitioners' reflections on online health information. We searched PUBMED, SCOPUS and Web of Science to capture research from various fields. Sixteen studies were included that met the following criteria: Qualitative study, focus on patient-practitioner communication, eHealth literacy and online information. The results show that the vast majority of studies were based on qualitative interviews, addressing patients' and practitioners' perspectives. Key topics in studies addressing patient perspectives were: reasons for seeking online information; calibrating understanding of online information with the practitioner; and barriers to discussing online information with practitioners. Key topics raised in studies focusing on practitioners were: trust in the patient and the online health information he/she presented as well as strategies to respond to patients who referred to online health information. The review highlights the need for further qualitative studies, preferably observational studies from authentic clinical communication situations, in order to capture how patients and practitioners communicate about online health information.

Dataset Information

Factors in Patient Empowerment: A Survey of an Online Patient Research Network.

Background

Objective

Methods

Results

Conclusions

Publications

Factors in Patient Empowerment: A Survey of an Online Patient Research Network.

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