23 research outputs found
Patient-reported outcomes and therapeutic affordances of social media findings from a global online survey of people with chronic pain
BACKGROUND: Patient-reported outcomes (PROs) from social media use in chronic disease management continue to emerge. While many published articles suggest the potential for social media is positive, there is a lack of robust examination into mediating mechanisms that might help explain social mediaâs therapeutic value. This study presents findings from a global online survey of people with chronic pain (PWCP) to better understand how they use social media as part of self-management. OBJECTIVE: Our aim is to improve understanding of the various health outcomes reported by PWCP by paying close attention to therapeutic affordances of social media. We wish to examine if demographics of participants underpin health outcomes and whether the concept of therapeutic affordances explains links between social media use and PROs. The goal is for this to help tailor future recommendations for use of social media to meet individualsâ health needs and improve clinical practice of social media use. METHODS: A total of 231 PWCP took part in a global online survey investigating PROs from social media use. Recruited through various chronic disease entities and social networks, participants provided information on demographics, health/pain status, social media use, therapeutic affordances, and PROs from use. Quantitative analysis was performed on the data using descriptive statistics, cross-tabulation, and cluster analysis. RESULTS: The total dataset represented 218 completed surveys. The majority of participants were university educated (67.0%, 146/218) and female (83.9%, 183/218). More than half (58.7%, 128/218) were married/partnered and not working for pay (75.9%, 88/116 of these due to ill health). Fibromyalgia (46.6%, 55/118) and arthritis (27.1%, 32/118) were the most commonly reported conditions causing pain. Participants showed a clear affinity for social network site use (90.0%, 189/210), followed by discussion forums and blogs. PROs were consistent, suggesting that social media positively impact psychological, social, and cognitive health. Analysis also highlighted two strong correlations linking platform used and health outcomes (particularly psychological, social, and cognitive) to (1) the narrative affordance of social media and (2) frequency of use of the platforms. CONCLUSIONS: Results did not uncover definitive demographics or characteristics of PWCP for which health outcomes are impacted. However, findings corroborate literature within this domain suggesting that there is a typical profile of people who use social media for health and that social media are more suited to particular health outcomes. Exploration of the relationship between social mediaâs therapeutic affordances and health outcomes, in particular the narration affordance, warrants further attention by patients and clinicians
How Participatory Health Informatics Catalyzes One Digital Health
Objective: To identify links between Participatory Health Informatics (PHI) and the One Digital Health framework (ODH) and to show how PHI could be used as a catalyst or contributor to ODH.
Methods: We have analyzed the addressed topics within the ODH framework in previous IMIA Yearbook contributions from our working group during the last 10 years. We have matched main themes with the ODH's framework three perspectives (individual health and wellbeing, population and society, and ecosystem).
Results: PHI catalysts ODH individual health and wellbeing perspective by providing a more comprehensive view on human health, attitudes, and relations between human health and animal health. Integration of specific behavior change techniques or gamification strategies in digital solutions are effective to change behaviors which address the P5 paradigm. PHI supports the population and society perspective through the engagement of the various stakeholders in healthcare. At the same time, PHI might increase a risk for health inequities due to technologies inaccessible to all equally and challenges associated with this. PHI is a catalyst for the ecosystem perspective by contributing data into the digital health data ecosystem allowing for analysis of interrelations between the various data which in turn might provide links among all components of the healthcare ecosystem.
Conclusion: Our results suggest that PHI can and will involve topics relating to ODH. As the ODH concept crystalizes and becomes increasingly influential, its themes will permeate and become embedded in PHI even more. We look forward to these developments and co-evolution of the two frameworks.publishedVersio
Ethical Considerations for Participatory Health through Social Media: Healthcare Workforce and Policy Maker Perspectives
Objectives: To identify the different ethical issues that should
be considered in participatory health through social media from
different stakeholder perspectives (i.e., patients/service users,
health professionals, health information technology (IT) professionals,
and policy makers) in any healthcare context.
Methods: We implemented a two-round survey composed of
open ended questions in the first round, aggregated into a list
of ethical issues rated for importance by participants in the
second round, to generate a ranked list of possible ethical issues
in participatory health based on healthcare professionalsâ and
policy makersâ opinions on both their own point of view and their
beliefs for other stakeholdersâ perspectives.
1 Introduction
Nowadays, individuals have more autonomy,
access to information, and human capital to
support their health decisions than previously
fathomable [1, 2]. These informed, connected,
and socially supported health consumers (or
patients) are leading a shift in the way healthcare
is approached, delivered, and governed.
This very notion lies at the heart of participatory
health, which centers on collaboration
and shared-decision making [2, 3].
Results: Twenty-six individuals responded in the first round
of the survey. Multiple ethical issues were identified for each
perspective. Data privacy, data security, and digital literacy
were common themes in all perspectives. Thirty-three individuals
completed the second round of the survey. Data privacy
and data security were ranked among the three most important
ethical issues in all perspectives. Quality assurance was the
most important issue from the healthcare professionalsâ
perspective and the second most important issue from the
patientsâ perspective. Data privacy was the most important
consideration for patients/service users. Digital literacy was
ranked as the fourth most important issue, except for policy
makersâ perspective.
Conclusions: Different stakeholdersâ opinions fairly agreed that
there are common ethical issues that should be considered across
the four groups (patients, healthcare professionals, health IT
professionals, policy makers) such as data privacy, security, and
quality assurance
Artificial Intelligence for Participatory Health: Applications, Impact, and Future Implications
Objective: Artificial intelligence (AI) provides people and
professionals working in the field of participatory health informatics
an opportunity to derive robust insights from a variety of online
sources. The objective of this paper is to identify current state of the
art and application areas of AI in the context of participatory health.
Methods: A search was conducted across seven databases
(PubMed, Embase, CINAHL, PsychInfo, ACM Digital Library,
IEEExplore, and SCOPUS), covering articles published since
2013. Additionally, clinical trials involving AI in participatory
health contexts registered at clinicaltrials.gov were collected and
analyzed.
Results: Twenty-two articles and 12 trials were selected for
review. The most common application of AI in participatory health was the secondary analysis of social media data:
self-reported data including patient experiences with healthcare
facilities, reports of adverse drug reactions, safety and efficacy
concerns about over-the-counter medications, and other
perspectives on medications. Other application areas included
determining which online forum threads required moderator
assistance, identifying users who were likely to drop out from
a forum, extracting terms used in an online forum to learn its
vocabulary, highlighting contextual information that is missing
from online questions and answers, and paraphrasing technical
medical terms for consumers.
Conclusions: While AI for supporting participatory health is
still in its infancy, there are a number of important research
priorities that should be considered for the advancement of the
field. Further research evaluating the impact of AI in participatory
health informatics on the psychosocial wellbeing of individuals
would help in facilitating the wider acceptance of AI into the
healthcare ecosystem
Ethical Issues of Social Media Usage in Healthcare
Accepted manuscript version. This article is not an exact copy of the original published article in The IMIA Yearbook of Medical Informatics. The definitive publisher-authenticated version of "Ethical Issues of Social Media Usage in Healthcare" is available online at http://doi.org/10.15265/IY-2015-001.OBJECTIVE:
Social media, web and mobile technologies are increasingly used in healthcare and directly support patientcentered care. Patients benefit from disease self-management tools, contact to others, and closer monitoring. Researchers study drug efficiency, or recruit patients for clinical studies via these technologies. However, low communication barriers in socialmedia, limited privacy and security issues lead to problems from an ethical perspective. This paper summarizes the ethical issues to be considered when social media is exploited in healthcare contexts.
METHODS:
Starting from our experiences in social-media research, we collected ethical issues for selected social-media use cases in the context of patient-centered care. Results were enriched by collecting and analyzing relevant literature and were discussed and interpreted by members of the IMIA Social Media Working Group.
RESULTS:
Most relevant issues in social-media applications are confidence and privacy that need to be carefully preserved. The patient-physician relationship can suffer from the new information gain on both sides since private information of both healthcare provider and consumer may be accessible through the Internet. Physicians need to ensure they keep the borders between private and professional intact. Beyond, preserving patient anonymity when citing Internet content is crucial for research studies.
CONCLUSION:
Exploiting medical social-media in healthcare applications requires a careful reflection of roles and responsibilities. Availability of data and information can be useful in many settings, but the abuse of data needs to be prevented. Preserving privacy and confidentiality of online users is a main issue, as well as providing means for patients or Internet users to express concerns on data usage
The use of YouTube for the self-management of arthritis and joint pain: a patient and public involvement study
This is an accepted manuscript of an article published by OUP in Rheumatology on 12/04/2019, available online: https://doi.org/10.1093/rheumatology/kez110.052
The accepted version of the publication may differ from the final published version
Use of eHealth technologies to enable the implementation of musculoskeletal Models of Care: Evidence and practice
Musculoskeletal (MSK) conditions are the second leading cause of morbidity-related burden of disease globally. EHealth is a potentially critical factor that enables the implementation of accessible, sustainable and more integrated MSK models of care (MoCs). MoCs serve as a vehicle to drive evidence into policy and practice through changes at a health system, clinician and patient level. The use of eHealth to implement MoCs is intuitive, given the capacity to scale technologies to deliver system and economic efficiencies, to contribute to sustainability, to adapt to low-resource settings and to mitigate access and care disparities. We follow a practice-oriented approach to describing the âwhatâ and âhowâ to harness eHealth in the implementation of MSK MoCs. We focus on the practical application of eHealth technologies across care settings to those MSK conditions contributing most substantially to the burden of disease, including osteoarthritis and inflammatory arthritis, skeletal fragility-associated conditions and persistent MSK pain
Participatory health through social media in chronic disease: a framework for research and practice
© 2015 Dr. Mark Anthony MerolliAs participatory health develops, healthcare as a whole continues to cautiously embrace social media and the vast possibilities they can bring. They may be useful to transform the management of people living with chronic disease by enabling them to be more active participants and shared-decision makers in their own care. Unfortunately, limited definitive evidence exists indicating that social media use can improve health outcomes, nor is research mature enough to have established stringent methodologies for examining social media in this context. Unlike a variety of evidence-based guidelines suggesting best practice for an array of chronic diseases, evidence that could underpin guidelines for use of social media remains inadequate. There are many unknowns, for example: How social media are used as part of self-management, what mechanisms underpin social mediaâs therapeutic potential, the health outcomes and other effects most likely to be impacted by social media, and whether social media can form an effective part of management in the clinical setting. The key challenge addressed by this thesis is whether criteria and methods for generating and evaluating evidence about health outcomes from social media use can be defined. A framework for research and practice has been developed, tested and refined to address this challenge. With further research using the framework across a range of conditions and contexts, evidence about patient-reported outcomes from social media use will grow. This will improve evidence-based decision-making about social media and ultimately benefit a variety of stakeholders: patients, clinicians, health researchers and health informaticians
Patient Empowerment Through Social Media
From book Participatory Health Through Social Media. pp.10-26. edited by Shabbir Syed-Abdul, Elia Gabarron, Annie Lau