Dataset Information

Online Communities as a Driver for Patient Empowerment: Systematic Review.

ABSTRACT:

Background

The 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.

Objective

We 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.

Methods

A 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.

Results

Findings 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.

Conclusions

There 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.

SUBMITTER: Johansson V

PROVIDER: S-EPMC7902187 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Online Communities as a Driver for Patient Empowerment: Systematic Review.

Johansson Victoria V Islind Anna Sigridur AS Lindroth Tomas T Angenete Eva E Gellerstedt Martin M

Journal of medical Internet research 20210209 2

<h4>Background</h4>The 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.<h4>Objective</h4>W ...[more]

PMID: 33560233

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Project description:BACKGROUND:Patient empowerment has gained considerable importance but uncertainty remains about the best way to define and measure it. The validity of empirical findings depends on the quality of measures used. This systematic review aims to provide an overview of studies assessing psychometric properties of questionnaires purporting to capture patient empowerment, evaluate the methodological quality of these studies and assess the psychometric properties of measures identified. METHODS:Electronic searches in five databases were combined with reference tracking of included articles. Peer-reviewed articles reporting psychometric testing of empowerment measures for adult patients in French, German, English, Portuguese and Spanish were included. Study characteristics, constructs operationalised and psychometric properties were extracted. The quality of study design, methods and reporting was assessed using the COSMIN checklist. The quality of psychometric properties was assessed using Terwee's 2007 criteria. FINDINGS:30 studies on 19 measures were included. Six measures are generic, while 13 were developed for a specific condition (N=4) or specialty (N=9). Most studies tested measures in English (N=17) or Swedish (N=6). Sample sizes of included studies varied from N=35 to N=8261. A range of patient empowerment constructs was operationalised in included measures. These were classified into four domains: patient states, experiences and capacities; patient actions and behaviours; patient self-determination within the healthcare relationship and patient skills development. Quality assessment revealed several flaws in methodological study quality with COSMIN scores mainly fair or poor. The overall quality of psychometric properties of included measures was intermediate to positive. Certain psychometric properties were not tested for most measures. DISCUSSION:Findings provide a basis from which to develop consensus on a core set of patient empowerment constructs and for further work to develop a (set of) appropriately validated measure(s) to capture this. The methodological quality of psychometric studies could be improved by adhering to published quality criteria.

Project description:BackgroundThe role of online health communities (OHCs) in patient empowerment is growing and has been increasingly studied in recent years. Research has focused primarily on individualistic conception of patients' empowerment, with much less attention paid to the role of OHCs in the development of patients' collective empowerment. Although OHCs have immense potential for empowerment that goes beyond the individual, the concept and scale of collective empowerment in OHCs have not yet been developed or validated.ObjectiveThis study aimed to develop an instrument for measuring collective empowerment in online health communities (CE-OHC) and to test its quality by investigating its factorial structure, reliability, construct validity, and predictive validity.MethodsThe CE-OHC scale was developed according to a strict methodology for developing valid and reliable scales. An initial set of 20 items was first tested in the pilot study conducted in 2016 using a sample of 280 registered users of Slovenia's largest OHC. A refined version with 11 items was tested in the main study conducted in 2018 on a random sample of 30,000 registered users of the same OHC. The final sample comprised 784 users. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were used to investigate the factorial structure, discriminant validity, and convergent validity of the scale. Cronbach alpha coefficient was used to determine the CE-OHC scale's internal consistency. To establish the predictive validity, ordinary least squares regression was performed to test the role of CE-OHC in users' civic participation.ResultsThe EFA resulted in a two-factor solution, and the two factors-knowledge of resources and resource mobilization for collective action-together explain 63.8% of the variance. The second-order CFA demonstrated a good fit to the data (root mean square error of approximation=0.07) and the scale had a good internal consistency (alpha=.86). Although evidence of the scale's convergent validity was partially provided, discriminant validity of the scale remained unconfirmed. Overall, CE-OHC was confirmed to be a predictor of users' civic participation, but the influence was somewhat weak and inconsistent across two subscales.ConclusionsThe proposed CE-OHC scale is a reliable and relatively valid instrument and serves as a good baseline to advance the measurement of collective empowerment in OHC contexts. This is the first scale developed for this purpose, and future research should focus on the development of a clear nomological network of the collective empowerment construct in relation to the OHC settings.

Project description:BackgroundProviders 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.ObjectiveThe 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.MethodsParticipants 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.ResultsOverall, 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.ConclusionsThe 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.

Project description:BACKGROUND:The content that cancer patients and their relatives (ie, posters) share in online cancer communities has been researched in various ways. In the past decade, researchers have used automated analysis methods in addition to manual coding methods. Patients, providers, researchers, and health care professionals can learn from experienced patients, provided that their experience is findable. OBJECTIVE:The aim of this study was to systematically review all relevant literature that analyzes user-generated content shared within online cancer communities. We reviewed the quality of available research and the kind of content that posters share with each other on the internet. METHODS:A computerized literature search was performed via PubMed (MEDLINE), PsycINFO (5 and 4 stars), Cochrane Central Register of Controlled Trials, and ScienceDirect. The last search was conducted in July 2017. Papers were selected if they included the following terms: (cancer patient) and (support group or health communities) and (online or internet). We selected 27 papers and then subjected them to a 14-item quality checklist independently scored by 2 investigators. RESULTS:The methodological quality of the selected studies varied: 16 were of high quality and 11 were of adequate quality. Of those 27 studies, 15 were manually coded, 7 automated, and 5 used a combination of methods. The best results can be seen in the papers that combined both analytical methods. The number of analyzed posts ranged from 200 to 1,500,000; the number of analyzed posters ranged from 75 to 90,000. The studies analyzing large numbers of posts mainly related to breast cancer, whereas those analyzing small numbers were related to other types of cancers. A total of 12 studies involved some or entirely automatic analysis of the user-generated content. All the authors referred to two main content categories: informational support and emotional support. In all, 15 studies reported only on the content, 6 studies explicitly reported on content and social aspects, and 6 studies focused on emotional changes. CONCLUSIONS:In the future, increasing amounts of user-generated content will become available on the internet. The results of content analysis, especially of the larger studies, give detailed insights into patients' concerns and worries, which can then be used to improve cancer care. To make the results of such analyses as usable as possible, automatic content analysis methods will need to be improved through interdisciplinary collaboration.

Project description:BACKGROUND:The number of patient online reviews (PORs) has grown significantly, and PORs have played an increasingly important role in patients' choice of health care providers. OBJECTIVE:The objective of our study was to systematically review studies on PORs, summarize the major findings and study characteristics, identify literature gaps, and make recommendations for future research. METHODS:A major database search was completed in January 2019. Studies were included if they (1) focused on PORs of physicians and hospitals, (2) reported qualitative or quantitative results from analysis of PORs, and (3) peer-reviewed empirical studies. Study characteristics and major findings were synthesized using predesigned tables. RESULTS:A total of 63 studies (69 articles) that met the above criteria were included in the review. Most studies (n=48) were conducted in the United States, including Puerto Rico, and the remaining were from Europe, Australia, and China. Earlier studies (published before 2010) used content analysis with small sample sizes; more recent studies retrieved and analyzed larger datasets using machine learning technologies. The number of PORs ranged from fewer than 200 to over 700,000. About 90% of the studies were focused on clinicians, typically specialists such as surgeons; 27% covered health care organizations, typically hospitals; and some studied both. A majority of PORs were positive and patients' comments on their providers were favorable. Although most studies were descriptive, some compared PORs with traditional surveys of patient experience and found a high degree of correlation and some compared PORs with clinical outcomes but found a low level of correlation. CONCLUSIONS:PORs contain valuable information that can generate insights into quality of care and patient-provider relationship, but it has not been systematically used for studies of health care quality. With the advancement of machine learning and data analysis tools, we anticipate more research on PORs based on testable hypotheses and rigorous analytic methods. TRIAL REGISTRATION:International Prospective Register of Systematic Reviews (PROSPERO) CRD42018085057; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=85057 (Archived by WebCite at http://www.webcitation.org/76ddvTZ1C).

Project description:BackgroundRecruitment for clinical trials continues to be a challenge, as patient recruitment is the single biggest cause of trial delays. Around 80% of trials fail to meet the initial enrollment target and timeline, and these delays can result in lost revenue of as much as US $8 million per day for drug developing companies.ObjectiveThis study aimed to conduct a systematic review and meta-analysis examining the effectiveness of online recruitment of participants for clinical trials compared with traditional in-clinic/offline recruitment methods.MethodsData on recruitment rates (the average number of patients enrolled in the study per month and per day of active recruitment) and conversion rates (the percentage of participants screened who proceed to enroll into the clinical trial), as well as study characteristics and patient demographics were collected from the included studies. Differences in online and offline recruitment rates and conversion rates were examined using random effects models. Further, a nonparametric paired Wilcoxon test was used for additional analysis on the cost-effectiveness of online patient recruitment. All data analyses were conducted in R language, and P<.05 was considered significant.ResultsIn total, 3861 articles were screened for inclusion. Of these, 61 studies were included in the review, and 23 of these were further included in the meta-analysis. We found online recruitment to be significantly more effective with respect to the recruitment rate for active days of recruitment, where 100% (7/7) of the studies included had a better online recruitment rate compared with offline recruitment (incidence rate ratio [IRR] 4.17, P=.04). When examining the entire recruitment period in months we found that 52% (12/23) of the studies had a better online recruitment rate compared with the offline recruitment rate (IRR 1.11, P=.71). For cost-effectiveness, we found that online recruitment had a significantly lower cost per enrollee compared with offline recruitment (US $72 vs US $199, P=.04). Finally, we found that 69% (9/13) of studies had significantly better offline conversion rates compared with online conversion rates (risk ratio 0.8, P=.02).ConclusionsTargeting potential participants using online remedies is an effective approach for patient recruitment for clinical research. Online recruitment was both superior in regard to time efficiency and cost-effectiveness compared with offline recruitment. In contrast, offline recruitment outperformed online recruitment with respect to conversion rate.

Project description:BACKGROUND:Research in type 1 diabetes management has increased exponentially since the irruption of mobile health apps for its remote and self-management. Despite this fact, the features affect in the disease management and patient empowerment are adopted by app makers and provided to the general population remain unexplored. OBJECTIVE:To study the gap between literature and available apps for type 1 diabetes self-management and patient empowerment and to discover the features that an ideal app should provide to people with diabetes. METHODS:The methodology comprises systematic reviews in the scientific literature and app marketplaces. We included articles describing interventions that demonstrated an effect on diabetes management with particular clinical endpoints through the use of mobile technologies. The features of these apps were gathered in a taxonomy of what an ideal app should look like to then assess which of these features are available in the market. RESULTS:The literature search resulted in 231 matches. Of these, 55 met the inclusion criteria. A taxonomy featuring 3 levels of characteristics was designed based on 5 papers which were selected for the synthesis. Level 1 includes 10 general features (Personalization, Family support, Agenda, Data record, Insulin bolus calculator, Data management, Interaction, Tips and support, Reminders, and Rewards) Level 2 and Level 3 included features providing a descriptive detail of Level 1 features. Eighty apps matching the inclusion criteria were analyzed. None of the assessed apps fulfilled the features of the taxonomy of an ideal app. Personalization (70/80, 87.5%) and Data record (64/80, 80.0%) were the 2 top prevalent features, whereas Agenda (5/80, 6.3%) and Rewards (3/80, 3.8%) where the less predominant. The operating system was not associated with the number of features (P=.42, F=.81) nor the type of feature (P=.20, ?2=11.7). Apps were classified according to the number of level 1 features and sorted into quartiles. First quartile apps had a regular distribution of the ten features in the taxonomy whereas the other 3 quartiles had an irregular distribution. CONCLUSIONS:There are significant gaps between research and the market in mobile health for type 1 diabetes management. While the literature focuses on aspects related to gamification, rewarding, and social communities, the available apps are focused on disease management aspects such as data record and appointments. Personalized and tailored empowerment features should be included in commercial apps for large-scale assessment of potential in the self-management of the disease.

Dataset Information

Online Communities as a Driver for Patient Empowerment: Systematic Review.

Background

Objective

Methods

Results

Conclusions

Publications

Online Communities as a Driver for Patient Empowerment: Systematic Review.

Similar Datasets

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