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Online HEALTH communities

The influence of social media on consumer empowerment

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Presented by Maxine Rand, DNP, NEA-BC, RN-BC, CPHIMS

There are no readings from the textbook for this assignment.

The purpose of this assignment is to validate information from an online health community (OHC) that focuses on a specific disease condition.

Learning Objectives

Compare the critical content on a website/blog to information published on known reputable websites.

Evaluate whether you would recommend that site to a patient/client with that condition.

Rate your satisfaction with the usability of an OHC based on each of these four dimensions of experience: (1) Relevance, (2) unique value, (3) credibility and (4) comprehensibility.

This assignment requires the composition of a brief paper evaluating three online communities from the patient experience perspective. You will use Nambisan’s four-dimensional online community experience (OCE) construct to evaluate three online health communities.

Use a one to two pages for each OHC website evaluation. You may want to consider creating a subheading as you discuss each dimension.

Post your 3 to 6 page paper to the Assignment # 4 link. The paper is due on Sunday by 11:59pm.

Assignment

Step 1. Review this power point presentation. Read the 2011 Nambisan article “Evaluating patient experience in online health communities: Implications for health care organizations, “in Weekly Materials.

Step 2. Explore the internet for virtual health communities including wikis, logs, and websites sponsored by individuals and organizations. Consider selecting OHCs that focus on a disease condition that you are familiar with (https://www.pinterest.com/restministries/health-communities-online/). Choose three online communities other than those discussed in this presentation. WebMD© also offers access to a variety of online communities (https://exchanges.webmd.com/default.htm)

Step 3. Take a screenshot of the homepage for each of the online communities that you choose to evaluate.

Step 4. Compose your paper. Assign at least one page per OHC website evaluation and respond to activities a, b, and c below for each OHC.

Describe the purpose of the virtual health community that you selected.

Evaluate the website based on 4 dimensions of experience: Pragmatic, empathic, sociability, and

usability experience. The parameters for evaluation are described in Nambisan’s article (Weekly Folder) with details in the next slide.

c) Describe why or why not you would recommend each site to a patient/client with that condition.

Four dimensions of patient experience in an online health community (From Nambisan, 2011)

Pragmatic – The website offers Information exchange, especially personalized information, social and emotional support, 24-hour access, anonymity, and opportunities for self-help. Provides FAQs and archives of messages, clustering of similar topics, and providing links to reputed patient education sites.

Empathic – The design of the website offers special forums within the community that bring together people with similar diseases or health backgrounds. Provides participants with a bird’s-eye view of the number of people who have similar disease or health background as themselves.

on ability to  post messages, read the threads, and find FAQs. The member derives feelings of compassion, warmth, sincerity, and sensitiveness toward oneself and toward the health problems they discuss with other members of the OHC.

Sociability – The website contains features that will allow members to form their own groups-groups that share a purpose, such as weight loss or treatment adherence-can enhance sociability potential. Many people find that difficult-to-adhere-to treatments are easier to manage through group interaction. You will find positive comments that are supportive, friendly, and polite vs. rude and insulting.

Usability – The website interface that allows users to navigate and participate in the online community environment smoothly and effortlessly and without any obstructions or annoyances that might distract them from their goals or interest in the community. Making the community accessible through mobile telephones is another way to improve the usability experience.

Healthcare institutions use technology as a means of providing services to promote health and guide patients toward resources that will foster a lifestyle free from illness and disability.

Consumers are stepping away from these institutional websites as a means of acquiring information to the use of the Internet through blogs, messageboards, and online communities. 

In 2007, Tom Ferguson, with the e-Patient Scholars Working Group, coined the term “e-patient,” and established three groups: (1) the well and their caregivers (“The Well”), (2) those facing a new medical challenge and their caregivers (“The Acutes”), and (3) those with chronic but stable illnesses and their caregivers (“The Chronics”). Chronics are more likely to develop websites for their condition, post content designed to help others, and to respond to questions raised by members of the community.

Origins of OHC

Communityware is a valuable resource to help networks of people with common interests accomplish tasks that formerly required centralized control and coordination, such as choosing the best doctor, deciding on the most appropriate treatment for a disease, and advice on resources and referrals.

Communityware is software that includes blogs, list-servs, web forums and chat rooms. It has continued to evolve as a result of Health 2.0, a term introduced in the mid-2000s to include health care technologies that promote collaboration between patients, their and healthcare professionals, and other stakeholders in health. Health 2.0 built on the possibilities for changing health care, which started with the introduction of eHealth in the mid-1990s following the emergence of the world wide web (The Economist, 2007}.

Communityware

Consumer exploration of the world wide web over the years supported the evolution from static pages to interactive tools. Social media and Web 2.0 empowered individuals to contribute their own content and provides easy access to information from online communities.

A growing number of virtual health communities emerged as consequence of ease in internet access using personal computers and cell phones. A 2011 Pew report found that of the 74 percent of adults who used the Internet, 80 percent (more than half of all US adults) looked for information on a specific disease or treatment.  Populations like Feguson’s “The Chronics,” seeking advice from others undergoing similar health problems, were overall more likely to seek out informal sources of peer-to-peer assistance than consult with medical professionals (Fox, 2011).

Social media

According to Innovate MedTech, a digital health network, social media in the healthcare ecosystem opens up the possibilities for many novel applications of social media in healthcare such as:

Promotion of awareness about diseases, precautions and other health-related information.

Tailoring consumer health-related wants, needs and preferences. Online applications like WebMD offer platforms for both consumer and physician-moderated health-related conversations.

Healthcare organizations use online communities for disease management. For example, Inspire.com offers patients 24/7 access to its peer communities.

Clinical investigators and contract research organizations use online communities to recruit volunteers for clinical trials.

Social scientists are exploring the advantages of participating in virtual health communities and how online social networks influence the spread of health information and behavior change (Centola, 2010, 2011).

The foundation for this research was established in 1954 when Lazarsfield and Merton attempted to determine if people select ties “homophilously,” i.e., based on preferences for others with similar characteristics. They coined the term “choice homophily,” where people preferentially make ties to others who are similar to themselves. Although social attributes establish a pathway toward selection, current research reveals that the selection of online health communities is centered around information seeking and establishing a standard against which to evaluate personal success (Centola & van der Rijt, 2014).

Online social networks

The number of users of online health communities such as PatientsLikeMe and, Braintalk, is growing.

PatientsLikeMe, for example, has approximately 400,000+ patients, quadruple the number of users it had in 2011.

In 2005, Hoch and Ferguson evaluated Braintalk, a community of neurology patients and caregivers designed to promote education and awareness of various neurological conditions and general health related concerns .

Although their findings span a period of 8 years, the impetus for joining online health communities remains similar.

BraintalkPatientsLikeMe
Provision of information and advice from others undergoing similar health problems.Advice they received from other members as reasons for their membership in the community
Exchange of emotional supportEmotional support received from other members
Positive psychosocial outcomes and enhanced well-being from frequent posts that focus on gaining insight into their struggles.
Development of a sense of communityMotivation they got from other members
Adherence to treatmentAccountability the sites provided them for reaching their health-related goals

OHCs

Research related to the value of virtual health communities through the analysis of user interactions could improve our understanding of health-related behaviors, the accuracy of information provided, and the design of technological solutions that support behavior change.

In 2016, researchers at The University of Texas School of Biomedical Informatics at Houston, Texas and Georgetown University Medical School, in Washington, DC, set out to explore communication patterns of users of a health-related community called QuitNet, one of the first online social networks aiming to promote health behavior change.

I had the opportunity to attend the American Medical Informatics Association 2016 annual conference and listen to them present the results of their research.

Patterns of use in an OHC

QuitNet is one of the first online social networks aiming to promote health behavior change, and has been in continuous existence for the past 14 years. It is widely used, with over 100,000 new registrants per year.. QuitNet indicated that participation in the online community was strongly correlated with abstinence.

Researchers processed 16,492 Quitnet messages, from a database of 16,492 messages generated from March through April 2007 using an automated classification system. The computer-annotated QuitNet data were then used to create theme-specific categories, that could be analyzed to understand patterns of social dynamics.

The users of QuitNet were classified into five mutually exclusive classes based on their self-reported abstinence.

Class 1: users who have remained abstinent throughout the study period

Class 2: users who were active smokers throughout the study period

Class 3: users who have relapsed (ex-smoker, active smoker) during the study period

Class 4: users who have successfully quit smoking (active smoker, ex-smoker) during the study period

Class 5: users who have relapsed multiple times during the study period.

Findings

Comments made by each class of users were categorized into subsets including

‘Quit Benefits,’ ‘Cravings,’ ‘Quit Progress,’ ‘Social support’, and ‘Quit Readiness.’

Ex-smokers focused most of their communication with peers on content related to

exchange of social support and monitoring their quit progress, reflecting on how far

each of them have come in their efforts to quit smoking.

Users exchanging information about benefits and cravings were strongly connected

among themselves in comparison with the rest of the network.

Themes identified in QuitNet messages included relapse, QuitNet-specific traditions,

and cravings. QuitNet members who were exposed to other abstinent members through the exchange of content related to interpersonal themes (e.g., social support, traditions, progress) tended to abstain.

Other themes showed no significant correlation with abstinence.

Use of an automated system that can analyze user interactions in an online health-related community lends to cohesion of communication themes across many behavioral states related to smoking cessation.

As demonstrated in the evaluation of online health communities (PatientsLikeMe, Braintalk) and research associated with hemophily, ex-smokers mostly focused their communication with peers on content related to exchange of social support and monitoring their quit progress, reflecting on how far each of them have come in their efforts to quit smoking.

Understanding benefits associated with this OHC will allow for the development of user specific approaches to smokers seeking to quit smoking, patterns of user participation in a robust network formation, and the development of targeted support within technology platforms such as QuitNet.

This analysis can enable the identification of specific OHC content that supports higher abstinence rates among community members, and facilitate the development of strategies that promote targeted health promotion.

Findings

What’s the right OHC for you?

Whether you choose to participate or explore, there is an online health community that will meet your personal needs or interests.

References

Braintalk website. Accessed January 1, 2017 at http://www.braintalkcommunities.org/forum.php

Centola, D., & van der Rijt, A. (2014). Choosing your network: Social preferences in an online health community. Social Science & Medicine, 125, 19-31. Retrieved from http://ndg.asc.upenn.edu/wp-content/uploads/2016/04/Centola-Van_de_Rijt-2014-Choosing_Your_Network.pdf

Centola, D. (2010). The spread of behavior in an online social network experiment.

Science, 329(5996), 1194–1197. Retrieved from http://www.sciencedirect.com.vlib.excelsior.edu/science/article/pii/S027795361400313X?

Ferguson, T. (2007). ePatients: how they can help us heal healthcare. Retrieved from http://www.e-patients.net/e-Patients_White_Paper.

Fox S. (2011). The Social Life of Health Information. Washington, DC: Pew Research Center. Retrieved from http://www.pewinternet.org/~/ media//Files/Reports/2011/ PIP_Social_Life_of_Health_Info.pdf.

Hajli, M. (2013). A research framework for social commerce adoption. Information Management & Computer Security, 21, 144–154.

He, W., Zha, S., & Li, L. (2013). Social media competitive analysis and text mining: A case study in the pizza industry. International Journal of Information Management, 33, 464–472. doi:10. 1016/j.ijinfomgt.2013.01.001

Health 2.0: Technology and society: Is the outbreak of cancer videos, bulimia blogs and other forms of ‘user generated’ medical information a healthy trend?”. The Economist. September 6, 2007. pp. 73–74. Retrieved from http://www.economist.com/node/9719054

Innovate Medtech website. Health 2.0-Social Media in Healthcare. Accessed January 2, 2017 at http://innovatemedtec.com/digital-health/health-social-media-in-healthcare

Lazarsfeld, P., Merton, R.K.,(1954). Friendship as a social process: a substantive and methodological analysis. In: Berger, M., Abel, T., & Page, C.H. (Eds.). Van Nostrand, New York, pp. 18e66.

Myneni, S., Cobb, N.K., & Cohen, T. (2016). Content-specific network analysis of peer-to-peer communication in an online community for smoking cessation. Paper presented at the American Medical Informatics Association Annual Conference, Chicago, Illinois, 14 November (pp. 934-943).

References

Nambisan, P. (2011). Evaluating patient experience in online health communities: Implications for health care organizations. Health Care Management Review, 36(2), 124-133.

Nath, C., Huh, J., Adupa, A.K., & Jonnalagadda, S.R. (2016). Website Sharing in Online Health Communities: A Descriptive Analysis.

Journal of Medical Internet Research, 8(1), e11. DOI: 10.2196/jmir.5237

PatientsLikeMe website. Accessed January 1, 2017 at https://www.patientslikeme.com/

Pinterest Health Communities Online website. Accessed January 1, 2017 at https://www.pinterest.com/restministries/health-communities-online/

Solberg, L. B. (2014). The benefits of online health communities. Virtual Mentor, 16(4), 270-274.2011)

References

4. Social Media Empowerment Grading Rubric

CategoryNeeds ImprovementDevelopingGood
Purpose4Does not describe purpose of the virtual health community6Somewhat describes the purpose of 1 virtual health community, providing only one specific detail that addresses the disease condition10Clearly describes 2 virtual health community purpose, providing two specific details that address the specific disease condition12Clearly and fully describes 3 virtual health communities, their purpose, providing at least three specific details that address the specific disease condition
Dimensions of experience8Describes only one dimension or incompletely addressed; no examples provided10Describes the website using two dimensions; some dimensions not completely addressed; limited examples provide12Clearly evaluates the website using at least three dimensions of experience; some examples noted; some gaps noted16Clearly and thoroughly evaluates the website, using all four dimensions of experience; provides examples to illustrate
Recommendation for patient4Offers opinion but no support for it.6Makes a recommendation but provides only one key point ; or rationales are limited in description10Provides a strong recommendation supported by at least two key points based in the literature12Provides a coherent recommendation supported by at least three key points based in the literature
Organization4Writing lacks logical organization. It shows some coherence but ideas lack unity. Serious errors.6Writing is coherent and logically organized. Some points are misplaced and stray from the topic. Transitions evident but not used throughout essay.10Writing is coherent and logically organized with transitions used between ideas and paragraphs to create coherence. Overall unity of ideas is present.12Writing shows high degree of attention to logic and reasoning of points. Unity clearly leads the reader to the conclusion and stirs thought regarding the topic.
Level of Content4Shows some thinking and reasoning but most ideas are underdeveloped and unoriginal.6Content indicates thinking and reasoning applied with original thought on a few ideas.10Content indicates original thinking and develops ideas with sufficient and firm evidence.12Content indicates synthesis of ideas, in-depth analysis and evidences original thought and support for the topic.
Development4Main points lack detailed development. Ideas are vague with little evidence of critical thinking.6Main points are present with limited detail and development. Some critical thinking is present.10Main points well developed with quality supporting details and quantity. Critical thinking is weaved into points.12Main points well developed with high quality and quantity support. Reveals high degree of critical thinking.
Grammar & Mechanics4Spelling, punctuation, and grammatical errors create distraction, making reading difficult; fragments, comma splices, run-ons evident. Errors are frequent.6Most spelling, punctuation, and grammar correct allowing reader to progress though essay. Some errors remain.10Essay has few spelling, punctuation, and grammatical errors and distractions. Very few fragments or run-on sentences.12Essay is free of distracting spelling, punctuation, and grammatical errors; absent of fragments, comma splices, and run-ons.
Format4Fails to follow format and assignment requirements; incorrect margins, spacing and indentation; neatness of essay needs attention.6Meets format and assignment requirements; generally correct margins, spacing, and indentations; essay is neat but may have some assembly errors.10Meets format and assignment requirements; margins, spacing, and indentations are correct; essay is neat and correctly assembled.12Meets all formal and assignment requirements and evidences attention to detail; all margins, spacing and indentations are correct; essay is neat and correctly assembled with professional look.

Adapted from http://home.snu.edu/~hculbert/criteria.pdf

The influence of social media on consumer empowerment.

1.Compare the critical content on a website/blog to information published on known reputable websites.

2.Evaluate whether you would recommend that site to a patient/client with that condition.

3.Rate your satisfaction with the usability of an OHC based on each of these four dimensions of experience:  (1) Relevance, (2) unique value, (3) credibility and (4) comprehensibility.

Instructions

The purpose of this assignment is to validate information from an online health community (OHC) that focuses on a specific disease condition.

Healthcare institutions use technology as a means of providing services to promote health and guide patients toward resources that will foster a lifestyle free from illness and disability. Consumers are stepping away from these institutional websites as a means of acquiring information to the use of the Internet through blogs, messageboards, and online communities.  In 2007, Tom Ferguson, with the e-Patient Scholars Working Group, coined the term “e-patient,” and established three groups:  (1) the well and their caregivers (“The Well”), (2) those facing a new medical challenge and their caregivers (“The Acutes”), and (3) those with chronic but stable illnesses and their caregivers (“The Chronics”).

Please review the detailed PPT presentation for Assignment # 4 instructions in the Week 14 folder.

1. Review Dr. Rand’s power point presentation “Online Health Communities: The influence of social media on consumer empowerment.

2. Read Nambisan’s article for instructions on how to evaluate Online Health Communities from a consumer perspective.

3. Explore online health communities recommended by Pinterest  https://www.pinterest.com/restministries/health-communities-online/ or WebMD  https://exchanges.webmd.com/default.htm

4. Follow the instructions on slide 4 of the power point presentation for specific instructions on how to complete this assignment.

Assign at least one page per OHC website evaluation and respond to activities a, b, and c below for each OHC.

a)   Describe the purpose of the virtual health community that you selected.

b)   Evaluate the website based on 4 dimensions of experience: Pragmatic, empathic, sociability, and usability experience.  The parameters for evaluation are described in Nambisan’s article (Week 14 folder) with details in the next slide.

c)   Describe why or why not you would recommend each site to a patient/client with that condition

Paper requirements: APA format including

· 3-6 page count – this EXCLUDES title page, abstract and reference page

· Title page

· Abstract of less 150 words must be included

· 3- 5 Key words

· Reference page with minimum of five (5) references from the literature required

· Font: Times Roman # 12, double spaced, one inch margins

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