Methods for studying information provision, networking and communication
						in patient support groups

Vasilica, Cristina; Ormandy, Paula

doi:10.29085/9781783302437.013

Cited by 3 publications

(5 citation statements)

References 68 publications

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“…In conclusion, according to this study, the significant considerations that guide members of medical support groups to disclose private information are the perceived group support and privacy policy. Thanks to social media in general and Facebook in particular, many do not rely passively on information published, but are interested in taking an active part in information production (Vasilica and Ormandy, 2017), and when it comes to medical information, the importance of maintaining privacy increases. Thus, group members who feel that they receive more support will tend to take part in the information production process, by proposing solutions to problems, responding and sharing personal experiences.…”

Section: Discussionmentioning

confidence: 99%

“…People in need of medical care are engaged in acquiring information at various points in the disease pathway, in order to be independent and manage AJIM 75,4 a "normal" life, prevent complications and improve survival rates. Social media in general, and Facebook in particular, have caused many not to rely on passive information (Vasilica and Ormandy, 2017). However, the higher the level of involvement of members of medical support groups, the greater the chance of receiving useful information and forming an agreement regarding information management (Tenuche, 2018).…”

Section: Private Information Managementmentioning

confidence: 99%

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Facebook medical support groups: the communication privacy management perspective

Avizohar

Gazit

Aharony

2022

AJIM

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PurposeExploring the considerations that guide and influence members of Facebook medical support groups to disclose private information.Design/methodology/approachThe sample included 293 participants, aged 18–85 years, who answered an online survey, 155 members of Facebook medical support groups and 138 members of other Facebook groups.FindingsMembers of medical support groups attach greater importance to privacy policy, give greater value to privacy and reveal more private information, compared to members of other groups. Members of medical support groups tend to feel that they receive more support and feel that the privacy policy preserves their privacy much more. These feelings are associated with greater self-disclosure of groups' members.Originality/valueThe research insights will help medical support groups' members and admins to put into action the fundamental right to privacy and build a set of rules tailored to their individual and group needs.

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Section: Discussionmentioning

confidence: 99%

Section: Private Information Managementmentioning

confidence: 99%

Facebook medical support groups: the communication privacy management perspective

Avizohar

Gazit

Aharony

2022

AJIM

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“…Setting up social media profiles is straightforward; however, engaging in the community will take time. This will be a key part of the process, however, as information shared contributes to sustained engagement [ 9 ].…”

Section: Methodsmentioning

confidence: 99%

“…Traditionally, patients with chronic illness obtain information relating to their condition from healthcare providers, who often focus on the clinical impact of disease and may ignore the effects on daily life or emotional well-being [ 12 ]. The rise of social media has allowed patients to exchange health-related information [ 1 , 2 ], which satisfies their information needs [ 9 ]. Patients may seek information for any number of reasons, including to: prepare for or decide upon treatment; manage symptoms; understand potential adverse effects; reduce uncertainty; and fill knowledge gaps [ 13–15 ].…”

Section: Introductionmentioning

confidence: 99%

“…Patients may seek information for any number of reasons, including to: prepare for or decide upon treatment; manage symptoms; understand potential adverse effects; reduce uncertainty; and fill knowledge gaps [ 13–15 ]. In addition, patients draw from enactive mastery experience (positive feedback as a result of posting), vicarious experience (other patients stories) and social persuasion (positive feedback, conversations), which contributes to an increase in self-efficacy [ 9 ]. Web-based resources and responsive interventions have had little clinical impact on outcomes for patients.…”

Section: Introductionmentioning

confidence: 99%

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Study protocol: responding to the needs of patients with IgA nephropathy, a social media approach

Graham-Brown

Vasilica

Oates³

et al. 2017

Clinical Kidney Journal

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BackgroundIgA nephropathy is the most common cause of glomerulonephritis in the Western world and predominantly affects young adults. Demographically these patients are the biggest users of social media. With increasing numbers of patients turning to social media to seek information and support in dealing with their disease, analysis of social media streams is an attractive modern strategy for understanding and responding to unmet patient need.MethodsTo identify unmet patient need in this population, a framework analysis will be undertaken of prospectively acquired social media posts from patients with IgA nephropathy, acquired from a range of different social media platforms. In collaboration with patients and members of the clinical multidisciplinary team, resources will be created to bridge gaps in patient knowledge and education identified through social media analysis and returned to patients via social media channels and bespoke websites. Analysis of the impact of these resources will be undertaken with further social media analysis, surveys and focus groups.ConclusionsPatients with chronic diseases are increasingly using social networking channels to connect with others with similar diseases and to search for information to help them understand their condition. This project is a 21st century digital solution to understanding patient need and developing resources in partnership with patients, and has wide applicability as a future model for understanding patient needs in a variety of conditions.

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A Co-Designed Social Media Intervention to Satisfy Information Needs and Improve Outcomes of Patients With Chronic Kidney Disease: Longitudinal Study

Vasilica¹,

Brettle²,

Ormandy³

2020

JMIR Form Res

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Background The number of people living with a long-term condition is increasing worldwide. Social media offers opportunities for patients to exchange information and experiences with others with the same condition, potentially leading to better self-management and improved patient outcomes, at minimal costs to health service providers. Objective This paper describes how an online network with a range of social media platforms was created, with the help of a group of patients with chronic kidney disease and specialist professionals. The project considered whether information needs and health-related and social outcomes were met. Methods We performed a longitudinal in-depth evaluation of the creation of the moderated network, observation of the use of the platforms, self-efficacy surveys (at baseline and 6 months), and semistructured interviews (at baseline and 6 months). Results A total of 15 patients and professionals participated in the co-design of the network (hub), which was initially launched with 50 patients. Several platforms were needed to engage patients at different levels and encourage generation of information, with the support of moderators. In addition, 14 separate patients participated in the evaluation. Satisfaction of information needs through social engagement improved self-efficacy (n=13) with better self-care and management of illness. Social outcomes included seeking employment and an increase in social capital. Conclusions An online network (hub) with several social media platforms helped patients with chronic kidney disease manage their condition. Careful co-designing with users resulted in a sustainable network with wider applicability across health and social care.

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Methods for studying information provision, networking and communication in patient support groups

Cited by 3 publications

References 68 publications

Facebook medical support groups: the communication privacy management perspective

Facebook medical support groups: the communication privacy management perspective

Study protocol: responding to the needs of patients with IgA nephropathy, a social media approach

A Co-Designed Social Media Intervention to Satisfy Information Needs and Improve Outcomes of Patients With Chronic Kidney Disease: Longitudinal Study

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