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1.
J Med Internet Res ; 23(1): e23654, 2021 02 03.
Artigo em Inglês | MEDLINE | ID: mdl-33533722

RESUMO

BACKGROUND: In recent years, digital tools have become a viable means for patients to address their health and information needs. Governments and health care organizations are offering digital tools such as self-assessment tools, symptom tracking tools, or chatbots. Other sources of digital tools, such as those offered through patient platforms, are available on the internet free of charge. We define patient platforms as health-specific websites that offer tools to anyone with internet access to engage them in their health care process with peer networks to support their learning. Although numerous social media platforms engage users without up-front charges, patient platforms are specific to health. As little is known about their business model, there is a need to understand what else these platforms are trying to achieve beyond supporting patients so that patients can make informed decisions about the benefits and risks of using the digital tools they offer. OBJECTIVE: The aim of this study is to explore what patient platforms are trying to achieve beyond supporting patients and how their digital tools can be used to generate income. METHODS: Textual and visual data collected from a purposeful selection of 11 patient platforms from September 2013 to August 2014 were analyzed using framework analysis. Data were systematically and rigorously coded and categorized according to key issues and themes by following 5 steps: familiarizing, identifying a thematic framework, indexing, charting, and mapping and interpretation. We used open coding to identify additional concepts not captured in the initial thematic framework. This paper reports on emergent findings on the business models of the platforms and their income-generating processes. RESULTS: Our analysis revealed that in addition to patients, the platforms support other parties with interests in health and information exchanges. Patient platforms did not charge up-front fees but generated income from other sources, such as advertising, sponsorship, marketing (eg, sending information to users on behalf of sponsors or providing means for sponsors to reach patients directly), supporting other portals, and providing research services. CONCLUSIONS: This study reports on the mechanisms by which some patient platforms generate income to support their operations, gain profit, or both. Although income-generating processes exist elsewhere on social media platforms in general, they pose unique challenges in the health context because digital tools engage patients in health and information exchanges. This study highlights the need to minimize the potential for unintended consequences that can pose health risks to patients or can lead to increased health expenses. By understanding other interests that patient platforms support, our findings point to important policy implications, such as whether (and how) authorities might protect users from processes that may not always be in their best interests and can potentially incur costs to the health system.


Assuntos
Participação do Paciente/métodos , Mídias Sociais/economia , Mídias Sociais/normas , Telemedicina/normas , Humanos , Internet , Pesquisa Qualitativa
2.
J Med Internet Res ; 21(11): e16274, 2019 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-31682578

RESUMO

We are fully aware that we could have wasted our time writing this message, as nobody might read it. Even those who read it might ignore it, and those who read and care about it might be unable to do anything. It may simply be too late. Nevertheless, this message describes the hopes we had back in 1999, imagining how the incredible digital tools whose birth we were witnessing, could change the world for the better. In 2019, when we wrote these words, we were saddened to realize that most of what we had imagined and proposed in the past 20 years could have been written the day before, without losing an iota of relevance. Whoever or whatever you might be, dear reader-a human, a sentient machine, or a hybrid-we would like you to understand that, rather than an attempt to predict the future, which probably continues to be an impossible endeavor, this message was meant to act as an invitation, regardless of when or where it is found, to engage in a conversation that has already transcended time and space, even if the issues it contains have become irrelevant.


Assuntos
Previsões , História do Século XXI , Humanos
3.
Int J Health Plann Manage ; 34(1): e142-e156, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30488981

RESUMO

Public-private partnerships (PPPs) in public health have gained great attention in the global health literature over the last two decades. Evidence suggests that PPPs could contribute to mitigating complex health problems. There is, however, limited knowledge about the process and specific conditions in which PPPs for healthy eating, in particular, can be developed successfully. To address this gap, this article first summarizes the literature, and second, using qualitative content analysis, identifies factors deemed to influence the process of building PPPs for healthy eating. The literature search was undertaken in two stages. The first stage focused on PPPs in public health to understand what constitutes a PPP, and the types and characteristics of PPPs. The second stage sought empirical examples and conceptual papers related to PPPs for healthy eating to identify critical elements that could facilitate or hinder partnerships between the government and the food industry. The search yielded 38 articles on PPPs in public health and 20 on PPPs for healthy eating. The analysis generated 23 individual elements that have the potential to influence a successful process of building PPPs for healthy eating (eg, endorsement from an individual champion, equal representation from partner organizations on board committees). The analysis also yielded five factors that appeared to well-represent the 23 individual elements of PPP formation: motivation, enablers, governance, benefits, and barriers. These results constitute an important step to understand critical factors involved in the formation of PPPs in public health and should inform additional empirical research to validate them.


Assuntos
Dieta Saudável , Promoção da Saúde/métodos , Parcerias Público-Privadas , Comportamento Alimentar , Promoção da Saúde/organização & administração , Humanos , Motivação
4.
Eur Spine J ; 27(7): 1517-1525, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-28924697

RESUMO

PURPOSE: Chiropractic spinal manipulation treatment (SMT) is common for back pain and has been reported to increase the risk for lumbar disc herniation (LDH), but there is no high quality evidence about this. In the absence of good evidence, clinicians can have knowledge and beliefs about the risk. Our purpose was to determine clinicians' beliefs regarding the risk for acute LDH associated with chiropractic SMT. METHODS: Using a belief elicitation design, 47 clinicians (16 chiropractors, 15 family physicians and 16 spine surgeons) that treat patients with back pain from primary and tertiary care practices were interviewed. Participants' elicited incidence estimates of acute LDH among a hypothetical group of patients with acute low back pain treated with and without chiropractic SMT, were used to derive the probability distribution for the relative risk (RR) for acute LDH associated with chiropractic SMT. RESULTS: Chiropractors expressed the most optimistic belief (median RR 0.56; IQR 0.39-1.03); family physicians expressed a neutral belief (median RR 0.97; IQR 0.64-1.21); and spine surgeons expressed a slightly more pessimistic belief (median RR 1.07; IQR 0.95-1.29). Clinicians with the most optimistic views believed that chiropractic SMT reduces the incidence of acute LDH by about 60% (median RR 0.42; IQR 0.29-0.53). Those with the most pessimistic views believed that chiropractic SMT increases the incidence of acute LDH by about 30% (median RR 1.29; IQR 1.11-1.59). CONCLUSIONS: Clinicians' beliefs about the risk for acute LDH associated with chiropractic SMT varied systematically across professions, in spite of a lack of scientific evidence to inform these beliefs. These probability distributions can serve as prior probabilities in future Bayesian analyses of this relationship.


Assuntos
Deslocamento do Disco Intervertebral/etiologia , Vértebras Lombares/lesões , Manipulação Quiroprática/efeitos adversos , Atitude do Pessoal de Saúde , Pessoal de Saúde , Humanos , Dor Lombar/terapia , Risco
5.
Eur Spine J ; 27(7): 1526-1537, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29038870

RESUMO

PURPOSE: Chiropractic care is popular for low back pain, but may increase the risk for acute lumbar disc herniation (LDH). Low back pain is a common early (prodromal) symptom of LDH and commonly precedes LDH diagnosis. Our objective was to investigate the association between chiropractic care and acute LDH with early surgical intervention, and contrast this with the association between primary care physician (PCP) care and acute LDH with early surgery. METHODS: Using a self-controlled case series design and population-based healthcare databases in Ontario, Canada, we investigated all adults with acute LDH requiring emergency department (ED) visit and early surgical intervention from April 1994 to December 2004. The relative incidence of acute LDH with early surgery in exposed periods after chiropractic visits relative to unexposed periods was estimated within individuals, and compared with the relative incidence of acute LDH with early surgery following PCP visits. RESULTS: 195 cases of acute LDH with early surgery (within 8 weeks) were identified in a population of more than 100 million person-years. Strong positive associations were found between acute LDH and both chiropractic and PCP visits. The risk for acute LDH with early surgery associated with chiropractic visits was no higher than the risk associated with PCP visits. CONCLUSIONS: Both chiropractic and primary medical care were associated with an increased risk for acute LDH requiring ED visit and early surgery. Our analysis suggests that patients with prodromal back pain from a developing disc herniation likely seek healthcare from both chiropractors and PCPs before full clinical expression of acute LDH. We found no evidence of excess risk for acute LDH with early surgery associated with chiropractic compared with primary medical care.


Assuntos
Deslocamento do Disco Intervertebral , Vértebras Lombares/lesões , Manipulação Quiroprática , Adulto , Humanos , Deslocamento do Disco Intervertebral/epidemiologia , Deslocamento do Disco Intervertebral/etiologia , Deslocamento do Disco Intervertebral/cirurgia , Dor Lombar/terapia , Manipulação Quiroprática/efeitos adversos , Manipulação Quiroprática/estatística & dados numéricos , Ontário/epidemiologia
6.
Rev Panam Salud Publica ; 35(5-6): 329-36, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25211558

RESUMO

OBJECTIVE: To examine the availability of national information and communication technology (ICT) or eHealth policies produced by countries in Latin America and the Caribbean (LAC), and to determine the influence of a country's socioeconomic context on the existence of these policies. METHODS: Documents describing a national ICT or eHealth policy in any of the 33 countries belonging to the LAC region as listed by the United Nations were identified from three data sources: academic databases; the Google search engine; and government agencies and representatives. The relationship between the existence of a policy and national socioeconomic indicators was also investigated. RESULTS: There has been some progress in the establishment of ICT and eHealth policies in the LAC region. The most useful methods for identifying the policies were 1) use of the Google search engine and 2) contact with Pan American Health Organization (PAHO) country representatives. The countries that have developed a national ICT policy seem to be more likely to have a national eHealth policy in place. There was no statistical significant association between the existence of a policy and a country's socioeconomic context. CONCLUSIONS: Governments need to make stronger efforts to raise awareness about existing and planned ICT and eHealth policies, not only to facilitate ease of use and communication with their stakeholders, but also to promote collaborative international efforts. In addition, a better understanding of the effect of economic variables on the role that ICTs play in health sector reform efforts will help shape the vision of what can be achieved.


Assuntos
Comunicação , Política de Saúde , Informática Médica , Telemedicina , Região do Caribe , Humanos , América Latina , Fatores Socioeconômicos
7.
Support Care Cancer ; 21(5): 1253-63, 2013 May.
Artigo em Inglês | MEDLINE | ID: mdl-23179491

RESUMO

PURPOSE: Online communities have been heralded as one of the most promising health resources on the Internet. The purpose of this study was to identify the characteristics and levels of use of online communities for breast cancer survivors. METHODS: Using Google, we identified websites with a string of computer-mediated communication terms and individual queries of three to five words of online community terms. This was complemented by a review of website resource lists and personal libraries. Two reviewers independently extracted information on their general characteristics and number of members and message board posts. A coding scheme guided content analysis. RESULTS: We found 111 websites. Most sites (n = 64, 65.8 %) had a broad focus (e.g., health, cancer, or general). One third (n = 38, 34.2 %) were exclusive to breast cancer and 11 catered to specific disease characteristics. The majority were American (n = 79, 75.2 %), nonprofit (55.0 %), and moderated (69.5 %). Most moderators (85.7 %) were staff or community members; eight sites were moderated by health professionals. Greater than one-third of sites (n = 40, 36 %) were initiated by breast cancer survivors or loved ones. Breast cancer-specific sites contained a total of 4,186,275 posts. One-third (n = 10) contained 93.4 % of posts, displaying over 100,000 posts each. As of April 3, 2012, eight sites were discontinued. CONCLUSIONS: There is a wide range of online communities available for breast cancer survivors with extensive archives of personal illness experiences. Future efforts should focus on identifying the factors that determine their success and effectiveness.


Assuntos
Neoplasias da Mama/psicologia , Internet , Apoio Social , Sobreviventes/psicologia , Feminino , Humanos , Rede Social
8.
J Med Internet Res ; 15(2): e36, 2013 Feb 19.
Artigo em Inglês | MEDLINE | ID: mdl-23422722

RESUMO

BACKGROUND: Purchasing electronic health records (EHRs) typically follows a process in which potential adopters actively seek information, compare alternatives, and form attitudes towards the product. A potential source of information on EHRs that can be used in the process is vendor websites. It is unclear how much product information is presented on EHR vendor websites or the extent of its value during EHR purchasing decisions. OBJECTIVE: To explore what features of EHR systems are presented by vendors in Ontario, Canada, on their websites, and the persuasive means they use to market such systems; to compare the online information available about primary care EHR systems with that about hospital EHR systems, and with data compiled by OntarioMD, a regional certifying agency. METHODS: A list of EHR systems available in Ontario was created. The contents of vendor websites were analyzed. A template for data collection and organization was developed and used to collect and organize information on the vendor, website content, and EHR features. First, we mapped information on system features to categories based on a framework from the Institute of Medicine (IOM). Second, we used a grounded theory-like approach to explore information for building consumer confidence in the vendor and product, and the various persuasive strategies employed on vendor websites. All data were first coded by one researcher. A peer reviewer independently analyzed a randomly chosen subset of the websites (10 of 21; 48%) and provided feedback towards a unified coding scheme. All data were then re-coded and categorized into themes. Finally, we compared information from vendor websites and data gathered by OntarioMD. RESULTS: Vendors provided little specific product information on their websites. Only two of five acute care EHR websites (40%) and nine of 16 websites for primary care systems (56%) featured seven or all eight of the IOM components. Several vendor websites included system interface demonstrations: screenshots (six websites), public videos or slideshows (four websites), or for registered viewers only (three websites). Persuasive means used by vendors included testimonials on 14/21 (67%) websites, and directional language. Except for one free system, trial EHR versions were not available. OntarioMD provided more comprehensive information about primary care systems than the vendors' websites. Of 14 points of comparison, only the inclusion of templates and bilingual interfaces were fully represented in both data sources. For all other categories, the vendor websites were less complete than the OntarioMD site. CONCLUSIONS: EHR vendor websites employ various persuasive means, but lack product-specific information and do not provide options for trying systems on a limited basis. This may impede the ability of potential adopters to form perceptions and compare various offerings. Both vendors and clients could benefit from greater transparency and more specific product information on the Web. TRIAL REGISTRATION: N/A.


Assuntos
Comércio , Registros Eletrônicos de Saúde/economia , Internet , Humanos , Marketing de Serviços de Saúde , Ontário , Telemedicina
9.
J Med Internet Res ; 15(12): e287, 2013 Dec 23.
Artigo em Inglês | MEDLINE | ID: mdl-24366061

RESUMO

BACKGROUND: Mobile phones have become nearly ubiquitous, offering a promising means to deliver health interventions. However, little is known about smartphone applications (apps) for cancer. OBJECTIVE: The purpose of this study was to characterize the purpose and content of cancer-focused smartphone apps available for use by the general public and the evidence on their utility or effectiveness. METHODS: We conducted a systematic review of the official application stores for the four major smartphone platforms: iPhone, Android, Nokia, and BlackBerry. Apps were included in the review if they were focused on cancer and available for use by the general public. This was complemented by a systematic review of literature from MEDLINE, Embase, and the Cochrane Library to identify evaluations of cancer-related smartphone apps. RESULTS: A total of 295 apps from the smartphone app stores met the inclusion criteria. The majority of apps targeted breast cancer (46.8%, 138/295) or cancer in general (28.5%, 84/295). The reported app purpose was predominantly to raise awareness about cancer (32.2%, 95/295) or to provide educational information about cancer (26.4%, 78/295), followed by apps to support fundraising efforts (12.9%, 38/295), assist in early detection (11.5%, 34/295), promote a charitable organization (10.2%, 30/295), support disease management (3.7%, 11/295), cancer prevention (2.0%, 6/295), or social support (1.0%, 3/295). The majority of the apps did not describe their organizational affiliation (64.1%, 189/295). Apps affiliated with non-profit organizations were more likely to be free of cost (χ(2) 1=16.3, P<.001) and have a fundraising or awareness purpose (χ(2) 2=13.3, P=.001). The review of the health literature yielded 594 articles, none of which reported an evaluation of a cancer-focused smartphone application. CONCLUSIONS: There are hundreds of cancer-focused apps with the potential to enhance efforts to promote behavior change, to monitor a host of symptoms and physiological indicators of disease, and to provide real-time supportive interventions, conveniently and at low cost. However, there is a lack of evidence on their utility, effectiveness, and safety. Future efforts should focus on improving and consolidating the evidence base into a whitelist for public consumption.


Assuntos
Aplicativos Móveis , Neoplasias/prevenção & controle , Telemedicina , Telefone Celular , Feminino , Promoção da Saúde , Humanos , Masculino , Neoplasias/diagnóstico , Neoplasias/terapia , Comportamento de Redução do Risco
10.
IEEE Trans Prof Commun ; 56(3): 194-209, 2013 Jun 04.
Artigo em Inglês | MEDLINE | ID: mdl-26190888

RESUMO

RESEARCH PROBLEM: Tutorials and user manuals are important forms of impersonal support for using software applications including electronic medical records (EMRs). Differences between user- and vendor documentation may indicate support needs, which are not sufficiently addressed by the official documentation, and reveal new elements that may inform the design of tutorials and user manuals. RESEARCH QUESTION: What are the differences between user-generated tutorials and manuals for an EMR and the official user manual from the software vendor? LITERATURE REVIEW: Effective design of tutorials and user manuals requires careful packaging of information, balance between declarative and procedural texts, an action and task-oriented approach, support for error recognition and recovery, and effective use of visual elements. No previous research compared these elements between formal and informal documents. METHODOLOGY: We conducted an mixed methods study. Seven tutorials and two manuals for an EMR were collected from three family health teams and compared with the official user manual from the software vendor. Documents were qualitatively analyzed using a framework analysis approach in relation to the principles of technical documentation described above. Subsets of the data were quantitatively analyzed using cross-tabulation to compare the types of error information and visual cues in screen captures between user- and vendor-generated manuals. RESULTS AND DISCUSSION: The user-developed tutorials and manuals differed from the vendor-developed manual in that they contained mostly procedural and not declarative information; were customized to the specific workflow, user roles, and patient characteristics; contained more error information related to work processes than to software usage; and used explicit visual cues on screen captures to help users identify window elements. These findings imply that to support EMR implementation, tutorials and manuals need to be customized and adapted to specific organizational contexts and workflows. The main limitation of the study is its generalizability. Future research should address this limitation and may explore alternative approaches to software documentation, such as modular manuals or participatory design.

11.
Artigo em Inglês | MEDLINE | ID: mdl-36833793

RESUMO

The current pilot study was set to evaluate the feasibility and potential benefit of a personalized computerized cognitive training (CCT) intervention to improve cognitive function among people living with post-acute sequelae of COVID-19 (PASC). Seventy three adults who self-reported cognitive dysfunction more than 3 months after a diagnosis of COVID-19 took part in an 8-week training study. Participants' general cognitive function was assessed before they completed as many cognitive daily training sessions as they wished during an 8-week period, using a personalized CCT application at home. At the end of this period, participants repeated the general cognitive function assessment. The differences between the scores at 8 weeks and baseline in five cognitive domains (attention, memory, coordination, perception, reasoning), complemented with analyses of the changes based on the participants' age, training time, self-reported health level at baseline and time since the initial COVID-19 infection. Participants had significant cognitive dysfunction and self-reported negative health levels at baseline. Most of the participants obtained higher scores after CCT in each of the domains as compared with baseline. The magnitude of this score increase was high across domains. It is concluded that a self-administered CCT based on gamified cognitive tasks could be an effective way to ameliorate cognitive dysfunction in persons with PASC. The ClinicalTrials.gov identifier is NCT05571852.


Assuntos
COVID-19 , Disfunção Cognitiva , Adulto , Humanos , Projetos Piloto , Estudos de Viabilidade , Disfunção Cognitiva/psicologia , Cognição , Síndrome de COVID-19 Pós-Aguda
12.
BMJ Support Palliat Care ; 13(4): 434-437, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33846127

RESUMO

OBJECTIVES: To ask all clinical, administrative and support staff affiliated with a large network of healthcare facilities to identify the conditions that they consider as non-negotiable for their own deaths to be regarded as good. METHODS: All 3495 staff of a healthcare network were asked to rank 10 conditions according to how non-negotiable they would be for themselves during their final 3 months or few hours for their own deaths to be considered as good. They were also asked about whether they had thought about their own death in the last 3 months, if they had a will, believed in God, and in the possibility of a good death, and the intensity of their fear of death. RESULTS: 2971 (85%) completed the survey. Most were female (79%) and clinical staff (65%). 93% believed in God, 60% had thought about their death recently, 33% had an intense fear of death, and 4% had a will. 64% considered a good death possible. Participants ranked dying at a preferred place, emotional support from family and friends and relief from physical symptoms as their top priorities. The lowest ranked conditions were (from the bottom) relief from psychological distress, performance of rituals and the right to terminate life. There were no statistically significant differences across genders or individual occupational groups. CONCLUSION: Most of conditions for a good death of interest to healthcare professionals could be provided without sophisticated medical infrastructure or specialised knowledge, opening the door for new support services to make it possible for everyone, anywhere.


Assuntos
Pessoal de Saúde , Cuidados Paliativos , Humanos , Masculino , Feminino , Cuidados Paliativos/psicologia , Pessoal de Saúde/psicologia , Atenção à Saúde
13.
Inform Prim Care ; 20(3): 185-95, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-23710843

RESUMO

BACKGROUND: In primary care settings, users often rely on vendors to provide support for health information technology (HIT). Yet, little is known about the vendors' perspectives on the support they provide, how support personnel perceive their roles, the challenges they face and the ways they deal with them. OBJECTIVE: To provide in-depth insight into an electronic medical record (EMR) vendor's perspective on end-user support. METHODS: As part of a larger case study research, we conducted nine semi-structured interviews with help desk staff, trainers and service managers of an EMR vendor, and observed two training sessions of a new client. RESULTS: With a growing client base, the vendor faced challenges of support staff shortage and high variance in users' technical knowledge. Additionally, users sometimes needed assistance with infrastructure, and not just software problems. These challenges sometimes hindered the provision of timely support and required supporters to possess good interpersonal skills and adapt to diverse client population. CONCLUSION: This study highlights the complexity of providing end-user support for HIT. With increased adoption, other vendors are likely to face similar challenges. To deal with these issues, supporters need not only strong technical knowledge of the systems, but also good interpersonal communication skills. Some responsibilities may be delegated to super-users. Users may find it useful to hire local IT staff, at least on an on-call basis, to provide assistance with infrastructure problems, which are not supported by the software vendor. Vendors may consider expanding their service packages to cover these elements.


Assuntos
Comércio , Registros Eletrônicos de Saúde , Atenção Primária à Saúde , Software , Humanos , Entrevistas como Assunto , Pesquisa Qualitativa
14.
Pain ; 163(6): 1006-1018, 2022 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-34510135

RESUMO

ABSTRACT: Chronic pain clinical trials have historically assessed benefit and risk outcomes separately. However, a growing body of research suggests that a composite metric that accounts for benefit and risk in relation to each other can provide valuable insights into the effects of different treatments. Researchers and regulators have developed a variety of benefit-risk composite metrics, although the extent to which these methods apply to randomized clinical trials (RCTs) of chronic pain has not been evaluated in the published literature. This article was motivated by an Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials consensus meeting and is based on the expert opinion of those who attended. In addition, a review of the benefit-risk assessment tools used in published chronic pain RCTs or highlighted by key professional organizations (ie, Cochrane, European Medicines Agency, Outcome Measures in Rheumatology, and U.S. Food and Drug Administration) was completed. Overall, the review found that benefit-risk metrics are not commonly used in RCTs of chronic pain despite the availability of published methods. A primary recommendation is that composite metrics of benefit-risk should be combined at the level of the individual patient, when possible, in addition to the benefit-risk assessment at the treatment group level. Both levels of analysis (individual and group) can provide valuable insights into the relationship between benefits and risks associated with specific treatments across different patient subpopulations. The systematic assessment of benefit-risk in clinical trials has the potential to enhance the clinical meaningfulness of RCT results.


Assuntos
Dor Crônica , Dor Crônica/diagnóstico , Dor Crônica/terapia , Humanos , Avaliação de Resultados em Cuidados de Saúde , Medição da Dor/métodos , Medição de Risco
15.
J Med Internet Res ; 13(1): e16, 2011 Feb 04.
Artigo em Inglês | MEDLINE | ID: mdl-21371990

RESUMO

BACKGROUND: Social network sites have been growing in popularity across broad segments of Internet users, and are a convenient means to exchange information and support. Research on their use for health-related purposes is limited. OBJECTIVE: This study aimed to characterize the purpose, use, and creators of Facebook groups related to breast cancer. METHODS: We searched Facebook (www.Facebook.com) using the term breast cancer. We restricted our analysis to groups that were related to breast cancer, operated in English, and were publicly available. Two of us independently extracted information on the administrator and purpose of the group, as well as the number of user-generated contributions. We developed a coding scheme to guide content analysis. RESULTS: We found 620 breast cancer groups on Facebook containing a total of 1,090,397 members. The groups were created for fundraising (277/620, 44.7%), awareness (236, 38.1%), product or service promotion related to fundraising or awareness (61, 9%), or patient/caregiver support (46, 7%). The awareness groups as a whole contained by far the most members (n = 957,289). The majority of groups (532, 85.8%) had 25 wall posts or fewer. The support oriented groups, 47% (27/57) of which were established by high school or college students, were associated with the greatest number of user-generated contributions. CONCLUSIONS: Facebook groups have become a popular tool for awareness-raising, fundraising, and support-seeking related to breast cancer attracting over one million users. Given their popularity and reach, further research is warranted to explore the implications of social network sites as a health resource across various health conditions, cultures, ages, and socioeconomic groups.


Assuntos
Neoplasias da Mama , Internet , Apoio Social , Feminino , Obtenção de Fundos , Promoção da Saúde , Humanos , Grupo Associado
16.
Inform Prim Care ; 19(3): 169-72, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-22688226

RESUMO

BACKGROUND: Support is often considered an important factor for successful implementation and realising the benefits of health information technology (HIT); however, there is a dearth of research on support and theoretical frameworks to characterise it. OBJECTIVE: To develop and present a comprehensive, holistic, framework for characterising enduser support that can be applied to various settings and types of information systems. METHOD: Scoping review of the medical informatics and information systems literature. RESULTS: A theoretical framework of end-user support is presented. It includes the following facets: support source, location of support, support activities, and perceived characteristics of support and support personnel. CONCLUSION: The proposed framework may be a useful tool for describing and characterising enduser support for HIT. it may also be used by decision makers and implementation leaders for planning purposes.


Assuntos
Informação de Saúde ao Consumidor , Aplicações da Informática Médica , Interface Usuário-Computador , Humanos , Sistemas de Informação/organização & administração
17.
Lancet Healthy Longev ; 2(9): e593-e600, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-36098155

RESUMO

The medicalisation of life under the influence of health-care systems, focused on curing diseases, has made dying well challenging. This systematic review identifies common themes from published systematic reviews about the conditions for a good death as a means to guide decisions around this universal event. MEDLINE, Embase, APA PsycInfo, and AMED were searched for citations with "good death" or "dying well" in their titles on Sept 23, 2020, and complemented with backward reference and forward citation screening with Google Scholar. Articles published in peer-reviewed journals in any language were included. Articles that focused on the identification of conditions for a good death and described how primary studies were sought and selected were also included. Data on general characteristics, quality, and themes were extracted independently. 13 of 275 potentially eligible reviews were included. Common themes were dying at the preferred place, relief from pain and psychological distress, emotional support from loved ones, autonomous treatment decision making, avoidance of futile life-prolonging interventions and of being a burden to others, right to assisted suicide or euthanasia, effective communication with professionals, and performance of rituals. No reviews specified the meaning or timing of death, connected themes, or prioritised them. Vague jargon was often used to describe complex concepts. Most conditions for a good death could be offered to most dying people, without costly medical infrastructure or specialised knowledge. Efforts to describe these conditions clearly, to identify whether there are exceptions or missing items, and whether they apply in non-dominant settings (ie, outstide institutional, affluent, anglophone, and Christian settings) are needed.


Assuntos
Eutanásia , Suicídio Assistido , Humanos , Revisão por Pares , Revisões Sistemáticas como Assunto
18.
Disabil Rehabil ; 32(2): 114-24, 2010.
Artigo em Inglês | MEDLINE | ID: mdl-19817663

RESUMO

PURPOSE: To explore the questions that community-dwelling individuals with a traumatic spinal cord injury (SCI) have regarding their chronic pain and to identify their preferred methods of acquiring this information. METHOD: Semi-structured interviews were conducted with 12 individuals experiencing SCI-related chronic pain. Qualitative content analysis was used to identify participants' questions about their pain and to organise them according to emergent themes. RESULTS: Six themes pertaining to chronic pain were identified. These included: (1) cause, (2) communication, (3) expectation, (4) getting information, (5) management and (6) other's experience with chronic pain. Participants described using a variety of sources to obtain information about chronic pain including health care providers, other SCI-consumers and the Internet. Participants preferred to have chronic pain information available to them on an as needed basis. CONCLUSIONS: Individuals with SCI have numerous questions about their chronic pain and use a variety of information sources to answer them. Many are dissatisfied with the level of knowledge that family physicians have about SCI-related chronic pain. This study provides valuable information from the consumer's perspective, which can be used to develop interventions to help health care professionals and consumers manage SCI-related chronic pain.


Assuntos
Dor Intratável/psicologia , Traumatismos da Medula Espinal/psicologia , Adulto , Idoso , Doença Crônica , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Medição da Dor , Educação de Pacientes como Assunto , Inquéritos e Questionários
19.
JMIR Public Health Surveill ; 6(2): e19199, 2020 05 13.
Artigo em Inglês | MEDLINE | ID: mdl-32374264

RESUMO

Real-world drug repurposing-the immediate "off-label" prescribing of drugs to address urgent clinical needs-is a widely overlooked opportunity. Off-label prescribing (ie, for a nonapproved indication) is legal in most countries and tends to shift the burden of liability and cost to physicians and patients, respectively. Nevertheless, health crises may mean that real-world repurposing is the only realistic source for solutions. Optimal real-world repurposing requires a track record of safety, affordability, and access for drug candidates. Although thousands of such drugs are already available, there is no central repository of off-label uses to facilitate immediate identification and selection of potentially useful interventions during public health crises. Using the current coronavirus disease (COVID-19) pandemic as an example, we provide a glimpse of the extensive literature that supports the rationale behind six generic drugs, in four classes, all of which are affordable, supported by decades of safety data, and targeted toward the underlying pathophysiology that makes COVID-19 so deadly. This paper briefly summarizes why cimetidine or famotidine, dipyridamole, fenofibrate or bezafibrate, and sildenafil citrate are worth considering for patients with COVID-19. Clinical trials to assess efficacy are already underway for famotidine, dipyridamole, and sildenafil, and further trials of all these agents will be important in due course. These examples also reveal the unlimited opportunity to future-proof our health care systems by proactively mining, synthesizing, cataloging, and evaluating the off-label treatment opportunities of thousands of safe, well-established, and affordable generic drugs.


Assuntos
Infecções por Coronavirus/tratamento farmacológico , Coronavirus , Custos de Medicamentos , Reposicionamento de Medicamentos , Medicamentos Genéricos , Uso Off-Label , Pandemias , Pneumonia Viral/tratamento farmacológico , Antivirais/uso terapêutico , Betacoronavirus , COVID-19 , Coronavirus/efeitos dos fármacos , Coronavirus/isolamento & purificação , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/virologia , Humanos , Pneumonia Viral/epidemiologia , Pneumonia Viral/virologia , Saúde Pública , SARS-CoV-2 , Tratamento Farmacológico da COVID-19
20.
JMIRx Med ; 1(1): e19583, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33724265

RESUMO

Real-world drug repurposing-the immediate "off-label" prescribing of drugs to address urgent clinical needs-is an indispensable strategy gaining rapid traction in the current COVID-19 crisis. Although off-label prescribing (ie, for a nonapproved indication) is legal in most countries, it tends to shift the burden of liability and cost to physicians and patients, respectively. Nevertheless, in urgent public health crises, it is often the only realistic source of a meaningful potential solution. To be considered for real-world repurposing, drug candidates should ideally have a track record of safety, affordability, and wide accessibility. Although thousands of such drugs are already available, the absence of a central repository of off-label uses presents a barrier to the immediate identification and selection of the safest, potentially useful interventions. Using the current COVID-19 pandemic as an example, we provide a glimpse at the extensive literature that supports the rationale behind six generic drugs, in four classes, all of which are affordable, supported by decades of safety data, and pleiotropically target the underlying pathophysiology that makes COVID-19 so dangerous. Having previously fast-tracked this paper to publication in summary form, we now expand on why cimetidine/famotidine (histamine type-2 receptor antagonists), dipyridamole (antiplatelet agent), fenofibrate/bezafibrate (cholesterol/triglyceride-lowering agents), and sildenafil (phosphodiesterase-5 inhibitor) are worth considering for patients with COVID-19 based on their antiviral, anti-inflammatory, renoprotective, cardioprotective, and anticoagulation properties. These examples also reveal the unlimited opportunity to future-proof public health by proactively mining, synthesizing, and cataloging the off-label treatment opportunities of thousands of safe, well-established, and affordable generic drugs.

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