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      What E-patients Want From the Doctor-Patient Relationship: Content Analysis of Posts on Discussion Boards

      research-article
      , BA(Hons), PhD 1 , , , EdD 1
      (Reviewer), (Reviewer)
      Journal of Medical Internet Research
      Gunther Eysenbach
      Physician-patient relations, consumer health informatics, eHealth, participatory medicine

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          Abstract

          Background

          People with long-term conditions are encouraged to take control and ownership of managing their condition. Interactions between health care staff and patients become partnerships with sharing of expertise. This has changed the doctor-patient relationship and the division of roles and responsibilities that traditionally existed, but what each party expects from the other may not always be clear. Information that people with long-term conditions share on Internet discussion boards can provide useful insights into their expectations of health care staff. This paper reports on a small study about the expectations that people with a long-term condition (diabetes) have of their doctors using information gleaned from Internet discussion boards.

          Objective

          The aim of this study was to ascertain what people with diabetes who use Internet discussion forums want from their doctors. The study objectives were to identify what people with diabetes (1) consider their role in condition management, (2) consider their doctor’s role in managing their condition, (3) see as positive elements of their interactions with medical staff, and (4) find problematic in their interactions with medical staff.

          Methods

          The study used qualitative methodology to explore the experiences, views, and perceptions of individuals participating on 4 Internet message boards. Posts made on the discussion boards were analyzed using the principles of qualitative content analysis. The meanings of sections of data were noted using codes that were developed inductively; those with similar codes were merged into subcategories and related subcategories were combined to form categories.

          Results

          The key themes identified in the study were ownership of condition management, power issues between people with long-term conditions and doctors, and ways in which people seek to manage their doctors.

          Conclusions

          People with diabetes valued doctors who showed respect for them and their knowledge, and were willing to listen and openly discuss their options. Patients felt that they could and should take responsibility for and control of their day-to-day disease management. They saw doctors as having a role in this process, but when this was lacking, many people felt able to use alternative means to achieve their goal, although the doctor’s function in terms of gatekeeping resources could create difficulties for them in this respect.

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          Most cited references32

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          An Online Community Improves Adherence in an Internet-Mediated Walking Program. Part 1: Results of a Randomized Controlled Trial

          Background Approximately half of American adults do not meet recommended physical activity guidelines. Face-to-face lifestyle interventions improve health outcomes but are unlikely to yield population-level improvements because they can be difficult to disseminate, expensive to maintain, and inconvenient for the recipient. In contrast, Internet-based behavior change interventions can be disseminated widely at a lower cost. However, the impact of some Internet-mediated programs is limited by high attrition rates. Online communities that allow participants to communicate with each other by posting and reading messages may decrease participant attrition. Objective Our objective was to measure the impact of adding online community features to an Internet-mediated walking program on participant attrition and average daily step counts. Methods This randomized controlled trial included sedentary, ambulatory adults who used email regularly and had at least 1 of the following: overweight (body mass index [BMI] ≥ 25), type 2 diabetes, or coronary artery disease. All participants (n = 324) wore enhanced pedometers throughout the 16-week intervention and uploaded step-count data to the study server. Participants could log in to the study website to view graphs of their walking progress, individually-tailored motivational messages, and weekly calculated goals. Participants were randomized to 1 of 2 versions of a Web-based walking program. Those randomized to the “online community” arm could post and read messages with other participants while those randomized to the “no online community" arm could not read or post messages. The main outcome measures were participant attrition and average daily step counts over 16 weeks. Multiple regression analyses assessed the effect of the online community access controlling for age, sex, disease status, BMI, and baseline step counts. Results Both arms significantly increased their average daily steps between baseline and the end of the intervention period, but there were no significant differences in increase in step counts between arms using either intention-to-treat or completers analysis. In the intention-to-treat analysis, the average step count increase across both arms was 1888 ± 2400 steps. The percentage of completers was 13% higher in the online community arm than the no online community arm (online community arm, 79%, no online community arm, 66%, P = .02). In addition, online community arm participants remained engaged in the program longer than no online community arm participants (hazard ratio = 0.47, 95% CI = 0.25 - 0.90, P = .02). Participants with lower baseline social support posted more messages to the online community (P < .001) and viewed more posts (P < .001) than participants with higher baseline social support. Conclusion Adding online community features to an Internet-mediated walking program did not increase average daily step counts but did reduce participant attrition. Participants with low baseline social support used the online community features more than those with high baseline social support. Thus, online communities may be a promising approach to reducing attrition from online health behavior change interventions, particularly in populations with low social support. Trial Registration NCT00729040; http://clinicaltrials.gov/ct2/show/NCT00729040 (Archived by WebCite at http://www.webcitation.org/5v1VH3n0A)
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            Reach, Engagement, and Retention in an Internet-Based Weight Loss Program in a Multi-Site Randomized Controlled Trial

            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.
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              The new subjective medicine: taking the patient's point of view on health care and health.

              Calls to respect patient autonomy and produce patient-centered outcomes have recently brought the patient's point of view back into the center of clinical medicine. Bioethics has argued that patient values must be respected in health care decisions. But it has generally not questioned medicine's goals, including its definition of health. For bioethics, health has remained an objective biological fact. However, pressures to improve the cost-effectiveness of medical care have increased interest in the subjective health and quality of life of patients. Perceived health, health-related quality of life, and health-state utilities bring health assessment progressively closer to the patient's perspective. Now even death's harm to patients is qualified by the value patients place on their health state. Medicine's epidemiological transition from acute to chronic disease is thus prompting an epistemological transition from primarily objective to primarily subjective evidence of health and health care effectiveness. Now some of the most important patient outcomes, like patient choices before them, are valid because they are subjective. Pathophysiology is appropriately becoming a means to produce health as it is defined from the patient's point of view. The physicians' job description will be changed to focus on patients' lives rather than patients' bodies. Definitive evaluations of medical effectiveness will occur within patients' lives rather than within doctors' hospitals. This further incorporation of patient subjectivity should carry us well beyond informed consent and the other protections for patient autonomy bequeathed to us by bioethics.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                Gunther Eysenbach (JMIR Publications Inc., Toronto, Canada )
                1439-4456
                1438-8871
                Nov-Dec 2012
                08 November 2012
                : 14
                : 6
                : e155
                Affiliations
                [1] 1Bournemouth University BournemouthUnited Kingdom
                Article
                v14i6e155
                10.2196/jmir.2068
                3510709
                23137788
                b701cea1-9bdf-475e-b36d-6de74a2903d4
                ©Jaqui Hewitt-Taylor, Carol S Bond. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 08.11.2012.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                History
                : 06 February 2012
                : 09 March 2012
                : 06 April 2012
                : 03 August 2012
                Categories
                Original Paper

                Medicine
                physician-patient relations,consumer health informatics,ehealth,participatory medicine

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