Communicating health decisions: an analysis of messages posted to online prostate cancer forums

Background  Experiential websites such as message forums and blogs allow Prostate Cancer (PCa) patients to communicate their health decisions to peers. The issues surrounding this form of indirect involvement in public health are little understood. Objective  This paper explores the types of decision-making processes that people are exposed to on PCa online message boards. The kinds of treatment choices patients are making and the reports of their decision-making processes to peers through an online environment are examined in the context of the Heuristic Systematic Model. Method  Messages about treatment decision making were collected from four PCa websites. In total, 137 messages were selected from blogs and online forums and their decision-making processes coded. Results  Men looking online for information about treatment options for PCa are exposed to a range of decision-making processes. Just under half (49.6%) of the messages reported non-systematic decision processes, with deferral to the doctor and proof of cancer removal being the most common. For systematic processing (36.5%), messages most commonly considered treatment outcomes and side-effects. Processes did not vary between the blogs and online forums. Discussion and conclusion  Compared to previous studies far fewer messages reported non-systematic decision processes and only a small number of messages reflected lay beliefs or misbeliefs about PCa treatment. Implications for men and their clinicians of seeking health information online are discussed

A qualitative comparison of how older breast cancer survivors process treatment information regarding endocrine therapy.

BACKGROUND:It remains unclear how information about aromatase inhibitors (AI) impacts women's decision-making about persistence with endocrine therapy. PURPOSE:To describe and compare how women treated for primary early stage breast cancer either persisting or not persisting with an AI received, interpreted, and acted upon AI-related information. DESIGN:Thematic analysis was used to sort and compare the data into the most salient themes. PARTICIPANTS:Women (N = 54; 27 persisting, 27 not persisting with an AI) aged 65-93 years took part in qualitative interviews. RESULTS:Women in both subgroups described information similarly in terms of its value, volume, type, and source. Aspects of AI-related information that either differed between the subgroups or were misunderstood by one or both subgroups included: (1) knowledge of AI or tamoxifen prior to cancer diagnosis, (2) use of online resources, (3) misconceptions about estrogen, hormone replacement therapies and AI-related symptoms, and (4) risk perception and the meaning and use of recurrence statistics such as Oncotype DX. CONCLUSIONS:Persisters and nonpersisters were similar in their desire for more information about potential side effects and symptom management at AI prescription and subsequent appointments. Differences included how information was obtained and interpreted. Interactive discussion questions are shared that can incorporate these findings into clinical settings

How do patients with end-stage ankle arthritis decide between two surgical treatments?:A qualitative study

To examine how patients decide between ankle fusion and ankle replacement in end-stage ankle arthritis

Patients, Professionals and the Internet: Renegotiating the Healthcare Encounter

The aim of this research was to examine how patient use of internet information impinges on the utilisation of healthcare services. The research had the following objectives: + to quantify the extent, and patterns, of patients use of the internet as a health information resource and identify the factors leading to variations in behaviour. + to identify the search strategies employed by patients in accessing internet health information internet and the evaluative approaches used in assessing information quality. + to analyse the content and dynamics of virtual health communities and how participation in such communities is integrated into engagement with health services. + to document the evolving nature of patient-professional interaction arising from patient access to health information and the subsequent format of the healthcare encounter. + to assess the effect of changing patient access to information and changes in the healthcare encounter on patterns of patient decision making and health behaviours

A service oriented approach for guidelines-based clinical decision support using BPMN

Evidence-based medical practice requires that clinical guidelines need to be documented in such a way that they represent a clinical workflow in its most accessible form. In order to optimize clinical processes to improve clinical outcomes, we propose a Service Oriented Architecture (SOA) based approach for implementing clinical guidelines that can be accessed from an Electronic Health Record (EHR) application with a Web Services enabled communication mechanism with the Enterprise Service Bus. We have used Business Process Modelling Notation (BPMN) for modelling and presenting the clinical pathway in the form of a workflow. The aim of this study is to produce spontaneous alerts in the healthcare workflow in the diagnosis of Chronic Obstructive Pulmonary Disease (COPD). The use of BPMN as a tool to automate clinical guidelines has not been previously employed for providing Clinical Decision Support (CDS)

What e-patients want from the doctor-patient relationship: content analysis of posts on discussion boards.

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

Digital support interventions for the self-management of low back pain: a systematic review

Background: Low back pain (LBP) is a common cause of disability and is ranked as the most burdensome health condition globally. Self-management, including components on increased knowledge, monitoring of symptoms, and physical activity, are consistently recommended in clinical guidelines as cost-effective strategies for LBP management and there is increasing interest in the potential role of digital health. Objective: The study aimed to synthesize and critically appraise published evidence concerning the use of interactive digital interventions to support self-management of LBP. The following specific questions were examined: (1) What are the key components of digital self-management interventions for LBP, including theoretical underpinnings? (2) What outcome measures have been used in randomized trials of digital self-management interventions in LBP and what effect, if any, did the intervention have on these? and (3) What specific characteristics or components, if any, of interventions appear to be associated with beneficial outcomes? Methods: Bibliographic databases searched from 2000 to March 2016 included Medline, Embase, CINAHL, PsycINFO, Cochrane Library, DoPHER and TRoPHI, Social Science Citation Index, and Science Citation Index. Reference and citation searching was also undertaken. Search strategy combined the following concepts: (1) back pain, (2) digital intervention, and (3) self-management. Only randomized controlled trial (RCT) protocols or completed RCTs involving adults with LBP published in peer-reviewed journals were included. Two reviewers independently screened titles and abstracts, full-text articles, extracted data, and assessed risk of bias using Cochrane risk of bias tool. An independent third reviewer adjudicated on disagreements. Data were synthesized narratively. Results: Of the total 7014 references identified, 11 were included, describing 9 studies: 6 completed RCTs and 3 protocols for future RCTs. The completed RCTs included a total of 2706 participants (range of 114-1343 participants per study) and varied considerably in the nature and delivery of the interventions, the duration/definition of LBP, the outcomes measured, and the effectiveness of the interventions. Participants were generally white, middle aged, and in 5 of 6 RCT reports, the majority were female and most reported educational level as time at college or higher. Only one study reported between-group differences in favor of the digital intervention. There was considerable variation in the extent of reporting the characteristics, components, and theories underpinning each intervention. None of the studies showed evidence of harm. Conclusions: The literature is extremely heterogeneous, making it difficult to understand what might work best, for whom, and in what circumstances. Participants were predominantly female, white, well educated, and middle aged, and thus the wider applicability of digital self-management interventions remains uncertain. No information on cost-effectiveness was reported. The evidence base for interactive digital interventions to support patient self-management of LBP remains weak

Giving and Receiving Peer Advice in an Online Breast Cancer Support Group

People have access to experiential information and advice about health online. The types of advice exchanged affect the nature of online communities and potentially patient decision making. The aim of this study was to examine the ways in which peers exchange advice within an online health forum in order to better understand online groups as a resource for decision making. Messages collected over a one-month period from an online breast cancer support forum were analyzed for examples of advice exchange. The majority of the messages solicited advice through problem disclosure or requests for information and opinion. A novel form of advice solicitation—“anyone in the same boat as me”—was noted as was the use of personal experience as a form of advice giving. Women construct their advice requests to target like-minded people. The implications in terms of decision making and support are discussed

TB STIGMA – MEASUREMENT GUIDANCE

TB is the most deadly infectious disease in the world, and stigma continues to play a significant role in worsening the epidemic. Stigma and discrimination not only stop people from seeking care but also make it more difficult for those on treatment to continue, both of which make the disease more difficult to treat in the long-term and mean those infected are more likely to transmit the disease to those around them. TB Stigma – Measurement Guidance is a manual to help generate enough information about stigma issues to design and monitor and evaluate efforts to reduce TB stigma. It can help in planning TB stigma baseline measurements and monitoring trends to capture the outcomes of TB stigma reduction efforts. This manual is designed for health workers, professional or management staff, people who advocate for those with TB, and all who need to understand and respond to TB stigma