Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data

Tue, 27 May 2008 06:09:32 EDT

Background: This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient–physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders—the patients—is not well documented or understood. Objective: PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues. Methods: Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other’s profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges. Results: Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns. Conclusions: Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient’s health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.

Purchases: 17

Design and Implementation of an Interactive Website to Support Long-Term Maintenance of Weight Loss

Fri, 25 Jan 2008 18:06:46 EST

Background: For most individuals, long-term maintenance of weight loss requires long-term, supportive intervention. Internet-based weight loss maintenance programs offer considerable potential for meeting this need. Careful design processes are required to maximize adherence and minimize attrition. Objective: This paper describes the development, implementation and use of a Web-based intervention program designed to help those who have recently lost weight sustain their weight loss over 1 year. Methods: The weight loss maintenance website was developed over a 1-year period by an interdisciplinary team of public health researchers, behavior change intervention experts, applications developers, and interface designers. Key interactive features of the final site include social support, self-monitoring, written guidelines for diet and physical activity, links to appropriate websites, supportive tools for behavior change, check-in accountability, tailored reinforcement messages, and problem solving and relapse prevention training. The weight loss maintenance program included a reminder system (automated email and telephone messages) that prompted participants to return to the website if they missed their check-in date. If there was no log-in response to the email and telephone automated prompts, a staff member called the participant. We tracked the proportion of participants with at least one log-in per month, and analyzed log-ins as a result of automated prompts. Results: The mean age of the 348 participants enrolled in an ongoing randomized trial and assigned to use the website was 56 years; 63% were female, and 38% were African American. While weight loss data will not be available until mid-2008, website use remained high during the first year with over 80% of the participants still using the website during month 12. During the first 52 weeks, participants averaged 35 weeks with at least one log-in. Email and telephone prompts appear to be very effective at helping participants sustain ongoing website use. Conclusions: Developing interactive websites is expensive, complex, and time consuming. We found that extensive paper prototyping well in advance of programming and a versatile product manager who could work with project staff at all levels of detail were essential to keeping the development process efficient. Trial Registration: clinicaltrials.gov NCT00054925

Purchases: 12

A Text Message-Based Intervention for Weight Loss: Randomized Controlled Trial

Tue, 13 Jan 2009 14:34:08 EST

Background: To our knowledge, no studies have evaluated whether weight loss can be promoted in overweight adults through the use of an intervention that is largely based on daily SMS (Short Message Service: text) and MMS (Multimedia Message Service: small picture) messages transmitted via mobile phones. Objective: This paper describes the development and evaluation of a text message-based intervention designed to help individuals lose or maintain weight over 4 months. Methods: The study was a randomized controlled trial, with participants being exposed to one of the following two conditions, lasting 16 weeks: (1) receipt of monthly printed materials about weight control; (2) an intervention that included personalized SMS and MMS messages sent two to five times daily, printed materials, and brief monthly phone calls from a health counselor. The primary outcome was weight at the end of the intervention. A mixed-model repeated-measures analysis compared the effect of the intervention group to the comparison group on weight status over the 4-month intervention period. Analysis of covariance (ANCOVA) models examined weight change between baseline and 4 months after adjusting for baseline weight, sex, and age. Results: A total of 75 overweight men and women were randomized into one of the two groups, and 65 signed the consent form, completed the baseline questionnaire, and were included in the analysis. At the end of 4 months, the intervention group (n = 33) lost more weight than the comparison group (?1.97 kg difference, 95% CI ?0.34 to ?3.60 kg, P = .02) after adjusting for sex and age. Intervention participants' adjusted average weight loss was 2.88 kg (3.16%). At the end of the study, 22 of 24 (92%) intervention participants stated that they would recommend the intervention for weight control to friends and family. Conclusions: Text messages might prove to be a productive channel of communication to promote behaviors that support weight loss in overweight adults. Trial Registration: Clinicaltrials.gov NCT00415870; http://clinicaltrials.gov/ct2/show/NCT00415870 (Archived by WebCite at http://www.webcitation.org/5dnolbkFt)

Purchases: 12

Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness

Mon, 25 Aug 2008 18:23:14 EDT

In a very significant development for eHealth, a broad adoption of Web 2.0 technologies and approaches coincides with the more recent emergence of Personal Health Application Platforms and Personally Controlled Health Records such as Google Health, Microsoft HealthVault, and Dossia. “Medicine 2.0” applications, services and tools are defined as Web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies and/or semantic web and virtual reality approaches to enable and facilitate specifically 1) social networking, 2) participation, 3) apomediation, 4) openness and 5) collaboration, within and between these user groups. The Journal of Medical Internet Research (JMIR) publishes a Medicine 2.0 theme issue and sponsors a conference on “How Social Networking and Web 2.0 changes Health, Health Care, Medicine and Biomedical Research”, to stimulate and encourage research in these five areas.

Purchases: 11

Associations of Internet Website Use With Weight Change in a Long-term Weight Loss Maintenance Program

Tue, 27 Jul 2010 08:04:19 EDT

Background: The Weight Loss Maintenance Trial (WLM) compared two long-term weight-maintenance interventions, a personal contact arm and an Internet arm, with a no-treatment control after an initial six-month Phase I weight loss program. The Internet arm focused on use of an interactive website for support of long-term weight maintenance. There is limited information about patterns of website use and specific components of an interactive website that might help promote maintenance of weight loss. Objective: This paper presents a secondary analysis of the subset of participants in the Internet arm and focuses on website use patterns and features associated with long-term weight maintenance. Methods: Adults at risk for cardiovascular disease (CVD) who lost at least 4 kilograms in an initial 20-week group-based, behavioral weight-loss program were trained to use an interactive website for weight loss maintenance. Of the 348 participants, 37% were male and 38% were African American. Mean weight loss was 8.6 kilograms. Participants were encouraged to log in at least weekly and enter a current weight for the 30-month study period. The website contained features that encouraged setting short-term goals, creating action plans, and reinforcing self-management habits. The website also included motivational modules, daily tips, and tailored messages. Based on log-in and weight-entry frequency, we divided participants into three website use categories: consistent, some, and minimal. Results: Participants in the consistent user group (n = 212) were more likely to be older (P = .002), other than African American (P = .02), and more educated (P = .01). While there was no significant difference between website use categories in the amount of Phase I change in body weight (P = .45) or income (P = .78), minimal website users (n = 75) were significantly more likely to have attended fewer Phase I sessions (P = .001) and had a higher initial body mass index (BMI) (P < .001). After adjusting for baseline characteristics including initial BMI, variables most associated with less weight regain included: number of log-ins (P = .001), minutes on the website (P < .001), number of weight entries (P = .002), number of exercise entries (P < .001), and sessions with additional use of website features after weight entry (P = .002). Conclusion: Participants defined as consistent website users of an interactive behavioral website designed to promote maintenance of weight loss were more successful at maintaining long-term weight loss. Trial Registration: NCT00054925; http://clinicaltrials.gov/ct2/show/NCT00054925 (Archived by WebCite at http://www.webcitation.org/5rC7523ue)

Purchases: 11

Pilot Randomized Trial of the Effect of Wireless Telemonitoring on Compliance and Treatment Efficacy in Obstructive Sleep Apnea

Thu, 17 May 2007 22:18:25 EDT

Background: Obstructive sleep apnea (OSA) is a prevalent and serious medical condition characterized by repeated complete or partial obstructions of the upper airway during sleep and is prevalent in 2% to 4% of working middle-aged adults. Nasal continuous positive airway pressure (CPAP) is the gold-standard treatment for OSA. Because compliance rates with CPAP therapy are disappointingly low, effective interventions are needed to improve CPAP compliance among patients diagnosed with OSA. Objective: The aim was to determine whether wireless telemonitoring of CPAP compliance and efficacy data, compared to usual clinical care, results in higher CPAP compliance and improved OSA outcomes. Methods: 45 patients newly diagnosed with OSA were randomized to either telemonitored clinical care or usual clinical care and were followed for their first 2 months of treatment with CPAP therapy. CPAP therapists were not blinded to the participants’ treatment group. Results: 20 participants in each group received the designated intervention. Patients randomized to telemonitored clinical care used CPAP an average of 4.1 ± 1.8 hours per night, while the usual clinical care patients averaged 2.8 ± 2.2 hours per night (P = .07). Telemonitored patients used CPAP on 78% ± 22% of the possible nights, while usual care patients used CPAP on 60% ± 32% of the nights (P = .07). No statistically significant differences between the groups were found on measures of CPAP efficacy, including measures of mask leak and the Apnea-Hypopnea Index. Patients in the telemonitored group rated their likelihood to continue using CPAP significantly higher than the patients in the usual care group. Patients in both groups were highly satisfied with the care they received and rated themselves as “not concerned” that their CPAP data were being wirelessly monitored. Conclusions: Telemonitoring of CPAP compliance and efficacy data and rapid use of those data by the clinical sleep team to guide the collaborative (ie, patient and provider) management of CPAP treatment is as effective as usual care in improving compliance rates and outcomes in new CPAP users. This study was designed as a pilot—larger, well-powered studies are necessary to fully evaluate the clinical and economic efficacy of telemonitoring for this population.

Purchases: 10

Reach, Engagement, and Retention in an Internet-Based Weight Loss Program in a Multi-Site Randomized Controlled Trial

Wed, 09 May 2007 00:59:20 EDT

Background: Research increasingly supports the conclusion that well-designed programs delivered over the Internet can produce significant weight loss compared to randomized controlled conditions. Much less is known about four important issues addressed in this study: (1) which recruitment methods produce higher eHealth participation rates, (2) which patient characteristics are related to enrollment, (3) which characteristics are related to level of user engagement in the program, and (4) which characteristics are related to continued participation in project assessments. Methods: We recruited overweight members of three health maintenance organizations (HMOs) to participate in an entirely Internet-mediated weight loss program developed by HealthMedia, Inc. Two different recruitment methods were used: personal letters from prevention directors in each HMO, and general notices in member newsletters. The personal letters were sent to members diagnosed with diabetes or heart disease and, in one HMO, to a general membership sample in a particular geographic location. Data were collected in the context of a 2×2 randomized controlled trial, with participants assigned to receive or not receive a goal setting intervention and a nutrition education intervention in addition to the basic program. Results: A total of 2311 members enrolled. Bivariate analyses on aggregate data revealed that personalized mailings produced higher enrollment rates than member newsletters and that members with diabetes or heart disease were more likely to enroll than those without these diagnoses. In addition, males, those over age 60, smokers, and those estimated to have higher medical expenses were less likely to enroll (all P < .001). Males and those in the combined intervention were less likely to engage initially, or to continue to be engaged with their Web program, than other participants. In terms of retention, multiple logistic regressions revealed that enrollees under age 60 (P < .001) and those with higher baseline self-efficacy were less likely to participate in the 12-month follow-up (P = .03), but with these exceptions, those participating were very similar to those not participating in the follow-up. Conclusions: A single personalized mailing increases enrollment in Internet-based weight loss. eHealth programs offer great potential for recruiting large numbers of participants, but they may not reach those at highest risk. Patient characteristics related to each of these important factors may be different, and more comprehensive analyses of determinants of enrollment, engagement, and retention in eHealth programs are needed

Purchases: 10

Using the Internet to Promote Health Behavior Change: A Systematic Review and Meta-analysis of the Impact of Theoretical Basis, Use of Behavior Change Techniques, and Mode of Delivery on Efficacy

Wed, 17 Feb 2010 13:03:11 EST

Background: The Internet is increasingly used as a medium for the delivery of interventions designed to promote health behavior change. However, reviews of these interventions to date have not systematically identified intervention characteristics and linked these to effectiveness. Objectives: The present review sought to capitalize on recently published coding frames for assessing use of theory and behavior change techniques to investigate which characteristics of Internet-based interventions best promote health behavior change. In addition, we wanted to develop a novel coding scheme for assessing mode of delivery in Internet-based interventions and also to link different modes to effect sizes. Methods: We conducted a computerized search of the databases indexed by ISI Web of Knowledge (including BIOSIS Previews and Medline) between 2000 and 2008. Studies were included if (1) the primary components of the intervention were delivered via the Internet, (2) participants were randomly assigned to conditions, and (3) a measure of behavior related to health was taken after the intervention. Results: We found 85 studies that satisfied the inclusion criteria, providing a total sample size of 43,236 participants. On average, interventions had a statistically small but significant effect on health-related behavior (d+ = 0.16, 95% CI 0.09-0.23). More extensive use of theory was associated with increases in effect size (P = .049), and, in particular, interventions based on the theory of planned behavior tended to have substantial effects on behavior (d+ = 0.36, 95% CI 0.15-0.56). Interventions that incorporated more behavior change techniques also tended to have larger effects compared to interventions that incorporated fewer techniques (P < .001). Finally, the effectiveness of Internet-based interventions was enhanced by the use of additional methods of communicating with participants, especially the use of short message service (SMS), or text, messages. Conclusions: The review provides a framework for the development of a science of Internet-based interventions, and our findings provide a rationale for investing in more intensive theory-based interventions that incorporate multiple behavior change techniques and modes of delivery.

Purchases: 9

The Contribution of Teleconsultation and Videoconferencing to Diabetes Care: A Systematic Literature Review

Fri, 14 Dec 2007 22:27:28 EST

Background: A systematic literature review was carried out to study the benefits of teleconsultation and videoconferencing on the multifaceted process of diabetes care. Previous reviews focused primarily on usability of technology and considered mainly one-sided interventions. Objective: The objective was to determine the benefits and deficiencies of teleconsultation and videoconferencing regarding clinical, behavioral, and care coordination outcomes of diabetes care. Methods: Electronic databases (Medline, PiCarta, PsycINFO, ScienceDirect, Telemedicine Information Exchange, ISI Web of Science, Google Scholar) were searched for relevant publications. The contribution to diabetes care was examined for clinical outcomes (eg, HbA1c, blood pressure, quality of life), behavioral outcomes (patient-caregiver interaction, self-care), and care coordination outcomes (usability of technology, cost-effectiveness, transparency of guidelines, equity of care access). Randomized controlled trials (RCTs) with HbA1c as an outcome were pooled using standard meta-analytical methods. Results: Of 852 publications identified, 39 met the inclusion criteria for electronic communication between (groups of) caregivers and patients with type 1, type 2, or gestational diabetes. Studies that evaluated teleconsultation or videoconferencing not particularly aimed at diabetes were excluded, as were those that described interventions aimed solely at clinical improvements (eg, HbA1c). There were 22 interventions related to teleconsultation, 13 to videoconferencing, and 4 to combined teleconsultation and videoconferencing. The heterogeneous nature of the identified videoconferencing studies did not permit a formal meta-analysis. Pooled results from the six RCTs of the identified teleconsultation studies did not show a significant reduction in HbA1c (0.03%, 95% CI = - 0.31% to 0.24%) compared to usual care. There was no significant statistical heterogeneity among the pooled RCTs (χ27= 7.99, P = .33). It can be concluded that in the period under review (1994-2006) 39 studies had a scope broader than clinical outcomes and involved interventions allowing patient-caregiver interaction. Most of the reported improvements concerned satisfaction with technology (26/39 studies), improved metabolic control (21/39), and cost reductions (16/39). Improvements in quality of life (6/39 studies), transparency (5/39), and better access to care (4/39) were hardly observed. Teleconsultation programs involving daily monitoring of clinical data, education, and personal feedback proved to be most successful in realizing behavioral change and reducing costs. The benefits of videoconferencing were mainly related to its effects on socioeconomic factors such as education and cost reduction, but also on monitoring disease. Additionally, videoconferencing seemed to maintain quality of care while producing cost savings. Conclusions: The selected studies suggest that both teleconsultation and videoconferencing are practical, cost-effective, and reliable ways of delivering a worthwhile health care service to diabetics. However, the diversity in study design and reported findings makes a strong conclusion premature. To further the contribution of technology to diabetes care, interactive systems should be developed that integrate monitoring and personalized feedback functions.

Purchases: 9

Using Internet and Mobile Phone Technology to Deliver an Automated Physical Activity Program: Randomized Controlled Trial

Sat, 28 Apr 2007 00:59:57 EDT

Background: The Internet has potential as a medium for health behavior change programs, but no controlled studies have yet evaluated the impact of a fully automated physical activity intervention over several months with real-time objective feedback from a monitor. Objective: The aim was to evaluate the impact of a physical activity program based on the Internet and mobile phone technology provided to individuals for 9 weeks. Methods: A single-center, randomized, stratified controlled trial was conducted from September to December 2005 in Bedfordshire, United Kingdom, with 77 healthy adults whose mean age was 40.4 years (SD = 7.6) and mean body mass index was 26.3 (SD = 3.4). Participants were randomized to a test group that had access to an Internet and mobile phone–based physical activity program (n = 47) or to a control group (n = 30) that received no support. The test group received tailored solutions for perceived barriers, a schedule to plan weekly exercise sessions with mobile phone and email reminders, a message board to share their experiences with others, and feedback on their level of physical activity. Both groups were issued a wrist-worn accelerometer to monitor their level of physical activity; only the test group received real-time feedback via the Internet. The main outcome measures were accelerometer data and self-report of physical activity. Results: At the end of the study period, the test group reported a significantly greater increase over baseline than did the control group for perceived control (P < .001) and intention/expectation to exercise (P < .001). Intent-to-treat analyses of both the accelerometer data (P = .02) and leisure time self-report data (P = .03) found a higher level of moderate physical activity in the test group. The average increase (over the control group) in accelerometer-measured moderate physical activity was 2 h 18 min per week. The test group also lost more percent body fat than the control group (test group: −2.18, SD = 0.59; control group: −0.17, SD = 0.81; P = .04). Conclusions: A fully automated Internet and mobile phone–based motivation and action support system can significantly increase and maintain the level of physical activity in healthy adults.

Purchases: 9

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