Online Patient Community Research Articles

A web-based study of the relationship of duration of insulin pump infusion set use and fasting blood glucose level in adults with type 1 diabetes.

To evaluate the impact of infusion set use duration on glycemic control, we conducted an Internet-based study using the T1D Exchange's online patient community, Glu ( myGlu.org ). For 14 days, 243 electronically consented adults with type 1 diabetes (T1D) entered online that day's fasting blood glucose (FBG) level, the prior day's total daily insulin (TDI) dose, and whether the infusion set was changed. Mean duration of infusion set use was 3.0 days. Mean FBG level was higher with each successive day of infusion set use, increasing from 126 mg/dL on Day 1 to 133 mg/dL on Day 3 to 147 mg/dL on Day 5 (P<0.001). TDI dose did not vary with increased duration of infusion set use. Internet-based data collection was used to rapidly conduct the study at low cost. The results indicate that FBG levels increase with each additional day of insulin pump infusion set use.

Social support and responsiveness in online patient communities: impact on service quality perceptions.

Hospitals frequently evaluate their service quality based on the care and services provided to patients by their clinical and non-clinical staff.(1,2) However, such evaluations do not take into consideration the many interactions that patients have in online patient communities with the health-care organization (HCO) as well as with peer patients. Patients' interactions in these online communities could impact their perceptions regarding the HCO's service quality. The objective of this pilot study was to evaluate the impact of social support and responsiveness that patients experience in an HCO's online community on patients' perceptions regarding the HCO's service quality. The study data are collected from CHESS, a health-care programme (Comprehensive Health Enhancement Support System) run by the Centre for Health Enhancement System Studies at the University of Wisconsin-Madison. Findings show that the social support and the responsiveness received from peer patients in the online patient communities will impact patients' perceptions regarding the service quality of the HCO even when the organizational members themselves do not participate in the online discussions. The results indicate that interactions in such HCO-provided online patient communities should not be ignored as they could translate into patients' perceptions regarding HCOs' service quality. Ways to improve responsiveness and social support in an HCO's online patient community are discussed.

Social media in clinical trials.

Social media has potential in clinical trials for pointing out trial issues, addressing barriers, educating, and engaging multiple groups involved in cancer clinical research. Social media is being used in clinical trials to highlight issues such as poor accrual and barriers; educate potential participants and physicians about clinical trial options; and is a potential indirect or direct method to improve accrual. We are moving from a passive "push" of information to patients to a "pull" of patients requesting information. Patients and advocates are often driving an otherwise reluctant health care system into communication. Online patient communities are creating new information repositories. Potential clinical trial participants are using the Twittersphere and other sources to learn about potential clinical trial options. We are seeing more organized patient-centric and patient-engaged forums with the potential to crowd source to improve clinical trial accrual and design. This is an evolving process that will meet many individual, institutional, and regulatory obstacles as we move forward in a changed research landscape.

Feasibility of a Web-Based Survey of Hallucinations and Assessment of Visual Function in Patients With Parkinson’s Disease

BackgroundPatients with Parkinson’s disease (PD) experience visual hallucinations, which may be related to decreased contrast sensitivity (ie, the ability to discern shades of grey).ObjectiveThe objective of this study was to investigate if an online research platform can be used to survey patients with Parkinson’s disease regarding visual hallucinations, and also be used to assess visual contrast perception.MethodsFrom the online patient community, PatientsLikeMe, 964 members were invited via email to participate in this study. Participants completed a modified version of the University of Miami Parkinson’s disease hallucinations questionnaire and an online vision test.ResultsThe study was completed by 27.9% (269/964) of those who were invited: 56.9% of this group had PD (153/269) and 43.1% (116/269) were non-Parkinson’s controls. Hallucinations were reported by 18.3% (28/153) of the Parkinson’s group. Although 10 subjects (9%) in the control group reported experiencing hallucinations, only 2 of them actually described formed hallucinations. Participants with Parkinson’s disease with a mean of 1.75 (SD 0.35) and the control group with a mean of 1.85 (SD 0.36) showed relatively good contrast perception as measured with the online letter test (P=.07). People who reported hallucinations showed contrast sensitivity levels that did not differ from levels shown by people without hallucinations (P=.96), although there was a trend towards lower contrast sensitivity in hallucinators.ConclusionsAlthough more Parkinson's responders reported visual hallucinations, a significant number of non-Parkinson's control group responders also reported visual hallucinations. The online survey method may have failed to distinguish between formed hallucinations, which are typical in Parkinson's disease, and non-formed hallucinations that have less diagnostic specificity. Multiple questions outlining the nature of the hallucinations are required. In a clinical interview, the specific nature of the hallucination would be further refined to rule out a vague description that does not indicate a true, formed visual hallucination. Contrary to previous literature, both groups showed relatively good contrast sensitivity, perhaps representing a ceiling effect or limitations of online testing conditions that are difficult to standardize. Steps can be taken in future trials to further standardize online visual function testing, to refine control group parameters and to take steps to rule out confounding variables such as comorbid disease that could be associated with hallucinations. Contacting subjects via an online health social network is a novel, cost-effective method of conducting vision research that allows large numbers of individuals to be contacted quickly, and refinement of questionnaires and visual function testing may allow more robust findings in future research.

After Dr Google: Peer-to-Peer Health Care

Although the majority of US adults has Internet access and gathers health information online, the Internet does not replace clinicians. People rate health professionals as their top source for technical questions such as diagnosis and treatment, but nonprofessionals (eg, friends and family) are rated higher for emotional support and quick remedies. For their most recent health issue, 21% of adults say they turned to others who have the same health condition; evidence of people's interest in connecting with and learning from each other. People living with chronic diseases (and their caregivers) are especially likely to say they look online for peer advice. They are pioneering new ways of pursuing health by banding together and sharing knowledge; so-called peer-to-peer health care. Practical tips from fellow patients and caregivers can have far-reaching implications for clinical outcomes. As a parent of a chronically ill child observed: "We all work collaboratively, but I notice that my doctor doesn't. After I've talked with my community online, I go back to him and ask, 'What do your colleagues say about this issue?' And it's clear it didn't occur to him to ask them." Clinicians might do well to look into online patient communities and consider recommending them as resources for their patients. Clinicians might look at patient networks as a model for their own collaborative learning process as well. Linking the expertise of patients, families, and clinicians holds promise for further improving care and outcomes.

Towards a Fourth Cosmology of Doctor-Patient Relationship: A Reflection on the Virtual Patient Community PatientsLikeMe

The aim of this paper is the study of an online patient community (Patientslikeme) and, specifically, of the impact of virtuality in the shaping of the patient-doctor relationship. Drawing from Kozinets’s research paradigm, known as ethnography of the Internet (Netnography), we investigate the patients’ attitudes toward the medical profession. Examining relevant data from the ALS forum, we set up three main axes of analysis: (a) the energetic versus passive stance towards doctors, (b) the evidence-based scientific knowledge versus alternative forms of knowledge, and (c) the positive versus negative attitude towards doctors and medical practices. The underlying theoretical hypothesis, i.e. whether the virtual community empowers patients over against the authority of the medical profession, is verified. Other interesting findings involve the value of evidence-based scientific knowledge, the intermediary role of the online community in building the patient-physician relationship, and the development of an alternative discourse towards the dominant medical discourse. All the above suggest that we have entered an era where the control of the patient is being transferred to another (digital) dimension, in which virtual communities play a crucial role.

Cancer patients on Twitter: a novel patient community on social media

BackgroundPatients increasingly turn to the Internet for information on medical conditions, including clinical news and treatment options. In recent years, an online patient community has arisen alongside the rapidly expanding world of social media, or “Web 2.0.” Twitter provides real-time dissemination of news, information, personal accounts and other details via a highly interactive form of social media, and has become an important online tool for patients. This medium is now considered to play an important role in the modern social community of online, “wired” cancer patients.ResultsFifty-one highly influential “power accounts” belonging to cancer patients were extracted from a dataset of 731 Twitter accounts with cancer terminology in their profiles. In accordance with previously established methodology, “power accounts” were defined as those Twitter accounts with 500 or more followers. We extracted data on the cancer patient (female) with the most followers to study the specific relationships that existed between the user and her followers, and found that the majority of the examined tweets focused on greetings, treatment discussions, and other instances of psychological support. These findings went against our hypothesis that cancer patients’ tweets would be centered on the dissemination of medical information and similar “newsy” details.ConclusionsAt present, there exists a rapidly evolving network of cancer patients engaged in information exchange via Twitter. This network is valuable in the sharing of psychological support among the cancer community.

The Role of the Internet in Expanding Consumer-Driven Adverse Drug Reaction Reporting

The reporting of adverse drug reactions (ADR) plays a critical role in helping to ensure the safety and efficacy of prescription drugs approved for sale in Canada. Although physicians have typically comprised the most important source of ADR reports, consumers themselves are now playing an increasingly active role in sharing information about their experiences with drug products. Due to the limitations on the ADR reporting systems maintained by governments, some privately developed databases are stepping in to meet growing consumer demand for the ability to both report and access information on ADRs. Concurrently, social media and new interactive technologies have transformed how consumers access health information online. In particular, many consumers participate in online patient communities that are aimed specifically at connecting patients with similar health experiences and concerns. Monitoring online consumer discussion of health conditions and medication use may help to highlight potential trends and problems early on. However, despite the promise of using interactive online technologies as a source of data on ADRs, critics are sceptical of the quality of such information and its ultimate utility. While there is clearly a need for caution, the move towards greater disclosure of adverse events information appears to be inevitable.

Engaging and Empowering Patients with Consumer eHealth Solutions - Fostering Patient Expertise

Health care spending is increasing worldwide. Many countries are anticipating a health care spending crisis. eHealth is seen as a way of introducing efficiencies and benefits into the system, partly by increasing the possibility of having patients manage their own care. The author looks at patient-centred care and its associated benefits, and suggests that the way to maximize those benefits moving forward is (in part) by engaging and empowering patients with eHealth solutions designed with patient expertise in mind. Generally speaking, eHealth solutions can help to foster a high level of patient expertise among some patients, who can then engage other patients in robust online patient communities, thus generating more benefits system-wide.

A New Model: Physician-Patient Collaboration in Online Communities and the Clinical Practice of Oncology

The practice of medicine is in the midst of a fundamental transformation based on the new availability of health information through the Internet and other sources accessible by the broad lay public, as well as on the easy sharing of experiences and content through social media. This is occurring at a time when the volume of new information required for optimal medical care is exceeding that which an individual physician can feasibly follow and master. The changes in cancer care are especially acute as we experience an ongoing reclassification of many disease entities to reflect divisions by molecular variables, often with new clinical options now optimized for very limited patient subsets. The increasing complexity of the field, combined with the high stakes of optimizing treatment decisions and the growing availability of a wide range of information in the public domain, make oncology an area in which patients and caregivers are most motivated to become active seekers of medical information and participants in their care decisions. The credibility of the available online information in such a situation has emerged as a critical issue, but physicians have historically been reluctant to create content or interact with the lay public in online patient communities. Here we will highlight several examples of collaborative engagement between health care professionals and motivated patients in an online environment that illustrate how a new bidirectional or even networked model that is a product of the Internet age can accelerate clinical research and improve delivery of cancer care.

Information, interaction and innovation in consumer health: New directions at the intersection of information science and informatics: Interaction track ∼ sponsored by SIG‐HEALTH

AbstractLongstanding approaches to health and health care are failing us: costs have skyrocketed while care quality remains highly uneven; the majority of health care in North America takes place in homes and communities rather than hospitals and doctor's offices; and institutionalized health care often does little to support people psychosocially or prevent people from becoming ill in the first place. Enthusiasm for the potential of consumer participation in health and health care has found advocates among health systems and insurers keen to reduce costs and patient organizations agitating for improved recognition and care. Alongside these trends, we find an increased focus on consumer health in the disciplines of information science and informatics. Health information science studies examine information behavior, information policy, terminology and information retrieval systems. Health informaticians focus on the design and evaluation of consumer‐facing technologies such as personal health records and health behavior tracking systems. Scholars in both fields pursue research concerning social media, including online patient communities. However, despite the growing momentum of scholarly activity in both fields, as well as their topical overlap, the fields remain largely separate, with differing research traditions and scholarly communities. In this panel, we find synergy and common ground between the two fields through an exploration of the conference themes of information, interaction and innovation. In a lightning talk format, eight panelists representing diverse research areas will share their perspectives upon key insights that each field can bring to the other. Building on the arguments presented, panelists and the audience will reflect on the state of consumer health research, and brainstorm regarding future scholarly directions that will leverage the strengths of both fields.

Benefits of Peer Support in Online Japanese Breast Cancer Communities: Differences Between Lurkers and Posters

BackgroundWeb 2.0 has improved interactions among peers on the Internet, especially for the many online patient communities that have emerged over the past decades. Online communities are said to be particularly beneficial peer support resources for patients with breast cancer. However, most studies of online patient communities have focused on those members who post actively (posters), even though there are many members who participate without posting (lurkers). In addition, little attention has been paid to the usage of online communities among non-English-speaking patients.ObjectiveThe present study explored the differences in peer support received by lurkers and posters in online breast cancer communities. It also examined the effects of such support on both groups’ mental health.MethodsWe conducted an exploratory, descriptive, cross-sectional, Web-based survey among members of four Japanese online breast cancer communities. In an online questionnaire, we asked questions regarding sociodemographics, disease-related characteristics, mental health, participation in online communities, and peer support received from those communities.ResultsOf the 465 people who accessed the questionnaire, 253 completed it. Of the respondents, 113/220 (51.4%) were lurkers. There was no significant difference between lurkers and posters with regard to sociodemographic variables. About half of the posters had been given a diagnosis of breast cancer less than a year previously, which was a significantly shorter period than that of the lurkers (P = .02). The 5 support functions extracted by factor analysis were the same for both posters and lurkers. These were emotional support/helper therapy, emotional expression, conflict, advice, and insight/universality. When the support scores were calculated, insight/universality scored highest for both posters and lurkers, with scores that were not significantly different between the two groups. Among the 5 support scores, emotional support/helper therapy and emotional expression were significantly higher among posters. For posters, emotional support/helper therapy and advice were negatively correlated with the anxiety subscale of the Hospital Anxiety and Depression Scale. Emotional expression, advice, and insight/universality were negatively correlated with the anxiety subscale for lurkers.ConclusionWe found that posters felt they received more benefits from online communities than lurkers did, including emotional support, helping other patients, and expressing their emotions. Yet even lurkers were found to gain a certain amount of peer support through online communities, especially with regard to advice and insight/universality. The results demonstrate that participation in online communities—even as a lurker—may be beneficial to breast cancer patients’ mental health.

Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm

Patients with serious diseases may experiment with drugs that have not received regulatory approval. Online patient communities structured around quantitative outcome data have the potential to provide an observational environment to monitor such drug usage and its consequences. Here we describe an analysis of data reported on the website PatientsLikeMe by patients with amyotrophic lateral sclerosis (ALS) who experimented with lithium carbonate treatment. To reduce potential bias owing to lack of randomization, we developed an algorithm to match 149 treated patients to multiple controls (447 total) based on the progression of their disease course. At 12 months after treatment, we found no effect of lithium on disease progression. Although observational studies using unblinded data are not a substitute for double-blind randomized control trials, this study reached the same conclusion as subsequent randomized trials, suggesting that data reported by patients over the internet may be useful for accelerating clinical discovery and evaluating the effectiveness of drugs already in use.

Patient Data Access and Online Sleep Apnea Communities

To show that some patients with sleep apnea on positive airway pressure therapy show an interest in obtaining further monitoring data with the support of online patient communities. A case study is presented in which a patient struggles to comply with his therapy and interacts with an online patient community. Next, a content analysis is described in which sleep apnea online communities are identified, an indexing language for patients' messages is developed, and patient messages are indexed into concepts from the indexing language. The case study patient substantially benefits from the guidance of other online patients about obtaining and interpreting monitoring and treatment data. In the content analysis of online communities, patients spend more time discussing long-term management than any other top-level concept and particularly focus on the role of data in long-term management. For certain patients, regularly accessing and interpreting their own detailed, monitoring data with support from other patients online seems important. Patients report that proprietary data formats from durable medical equipment manufacturers hinder patient access to their own data.

Diffusion of potential health-related e-services: An analysis of Swiss health customer perspectives

AbstractHealth-related e-services can be customised to the needs of different customer groups and as such have the potential to improve delivery efficiency and increase customer satisfaction and loyalty. Based on the diffusion of innovations theory proposed by E. M. Rogers, this paper investigates the attitude of Swiss university students (n = 2,775) regarding health-related e-service trends. The paper also investigates the impact of compatibility attributes on the adoption of health-related e-services, applying a case study research methodology based on an e-survey and cross-tabulation for the data analysis. Results show that health wikis, online health accounts and rating tools for care providers were highly rated by the students. Online forums and online patient communities seem to be increasing in popularity, whereas e-services providing only company/product information were generally rather poorly rated. Furthermore, the study finds that compatibility attributes have a significant positive effect on ...

Comparison of Physicians' and Patients' Perception on the Effect of Internet Health Information

Objective: To determine the differences between the patient's and physicians' views of the effects of internet health infor- mation on the physician-patient relationship. Methods: An online survey was carried out with 25 items developed by revising the questionnaire of Direct-to-Consumer Advertising to accommodate the internet health information. The respondents were 671 patients who were active participants in online patient communities and 493 physicians who were the professors of medical schools and practicing physicians. Results: Most of the patients were positive toward the Internet Health Information saying that it gives them advice from a doctor with self-confidence, allows them to follow their doctor's directions well, obtain more medical treatment after retrieving the information, etc. In contrast, physicians perceived that the internet health information may have variety of negative effects, such as increasing the healthcare cost, unnecessary clinic visits and undermining of the doctor-patient relationship. There were significant differences in the perspectives between the physicians and patients. Conclusion: It will be necessary to ensure experts provide internet health information, which will have bene- ficial effects on the quality of care, physician-patient relationship, and health service utilization. (Journal of Korean Society of Medical Informatics 15-4, 373-379, 2009)

Experience-based Information: The Role of Web-based Patient Networks in Consumer Health Information Services

ABSTRACT The prevalence of Web-based patient networks creates a substantial need for health information professionals to consider the qualities of such patient-mediated communities. By understanding the social and design characteristics of such communities through online patient community ethnography and comparative analysis of Web information evaluation criteria, health information professionals can better understand how to evaluate these information sources and find service integration points.