INFORMATION SOURCES REVIEW! 1. The Consumer Health Information Community. Information Sources Review. Nathan Kavanaugh. San Jose State University

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1 INFORMATION SOURCES REVIEW! 1 The Consumer Health Information Community Information Sources Review Nathan Kavanaugh San Jose State University

2 INFORMATION SOURCES REVIEW! 2 Abstract The similarities and differences amongst research-based information sources and community-based information sources are examined in detail in relation to the information community they serve. MedlinePlus, a comprehensive health information website, represents the research-based information source; PatientsLikeUs, an online community emphasizing the perspectives of patients regarding their health conditions and health services acts as the community-based information source. Both health professionals and the information-seeking public stand to gain new insight and knowledge from both sources, as research and medical studies are provided and presented in easily understandable language. The two information sources meet similar needs as well as cater to the needs and wants of their respective, specific audiences. Keywords: consumer health, information seeking, information community, online community

3 INFORMATION SOURCES REVIEW! 3 Introduction There is a wide array of resources available to the consumer health information community. In seeking out consumer health information, people may find reliable sources in public libraries, a pamphlet from a waiting room at the doctor s office, or a consumer health web site. In recognizing the various ways allowing people to gain access to consumer health information, it must be said that there are different sorts of resources that meet some needs better than others. By using research-based information sources, community members can gain insight from peer-reviewed medical research offering information that can be interpreted as reliable and approved by authoritative sources. In the case of a community-based information source, community members can find information that is contributed and reviewed by other members of that information community; information can be sought out with the understanding that it is provided by people who share the common interests of the information community, and that in being grounded in those shared views the information is more likely to be relevant and useful to community members. There is much to gain from both research-based and community-based information sources; in this review, I will discuss and evaluate the merits of two examples, one from each category. Resources

4 INFORMATION SOURCES REVIEW! 4 In choosing one research-based information source and one community-based information source that would suit my chosen information community, the consumer health community, I decided to choose two resources that put an emphasis on providing efficient ease of accessibility for the users themselves. For the research-based information source, I chose MedlinePlus, a website developed by the U.S. National Library of Medicine; for the communitybased information source, I decided to explore PatientsLikeMe, a community-driven website focusing on various medical patient experiences. Research-Based Source Medlineplus - health information from the national library of medicine. (2015). Retrieved from MedlinePlus is a consumer health information web site developed and provided by the U.S. National Library of Medicine. As MedlinePlus draws greatly on research from the U.S. National Library of Medicine, research which can be produced and recorded years beforehand or can be as recent as the last few months, the web site holds a position in the information cycle decidedly identified as Months after the Event. The research used in assembling the information for MedlinePlus covers a wealth of information regarding numerous conditions, diseases, and forms of treatment spans over a number of years; at the same time, MedlinePlus is a functioning web site that is updated throughout the year, and as medical information based on research can always be influenced by new and recent discoveries in the field, the web site can be considered as being Months after the Event in the information cycle.

5 INFORMATION SOURCES REVIEW! 5 The scope of MedlinePlus can be described as quite broad, providing information on over 950 diseases and conditions, and on a national level; MedlinePlus aims to provide information on consumer health that can be used to help educate and benefit all citizens of the United States of America who seek to inquire about health conditions, or even basic information about human anatomy and biological systems. Information regarding drugs, both prescription and nonprescription, is also available via the web site, as are a medical encyclopedia and a medical dictionary ( About MedlinePlus, 2015). The authors of MedlinePlus can be considered credible and authoritative as they consist of contributors from the National Institutes of Health. MedlinePlus indicates the sources from which they gather their information, and provide links to sources deemed as trustworthy by U.S. National Library of Medicine. The slogan underneath the MedlinePlus logo reads Trusted Health Information for You ; while MedlinePlus is presented as a trustworthy source, it is made clear in a disclaimer that MedlinePlus does not aim to give advice or provide certifiable support for any diagnoses regarding any condition, but is rather meant to provide health information for those who seek it. MedlinePlus is intended for health professionals and the general public alike, and is delivered in a language that is accessible and easy to understand for the many of us who are not well-versed in medical jargon, though the provided online medical dictionary can assist with this issue. The design for MedlinePlus is meant to be useful to both health professionals and the general public. Health professionals may find MedlinePlus useful for the concrete and reliable information on health conditions, and links to sites detailing emerging medical research and

6 INFORMATION SOURCES REVIEW! 6 clinical trials; for the general public, this same information is provided in an unintimidating and accessible format. As MedlinePlus is a web site funded by the U.S. federal government, one might assume the web site to have a bias in favor of Western medicine; while information regarding Western medicine is given considerably more attention, there is a section of the website devoted to providing information on alternative medicine, including information on herbal supplements, acupuncture, and chiropractic therapy. Ultimately, MedlinePlus proves to be a highly valuable resource to the consumer health information community. Its wide breadth of information and optimal accessibility makes MedlinePlus a resource that can be referred to for reliable health information that can be used to facilitate better and more substantial understandings of numerous health topics. Community-Based Source Patientslikeme. (2015). Retrieved from PatientsLikeMe acts as both a web site and an online community where users can post about their varied experiences with health conditions and health services via blogs and message boards; user activity ranges from discussing diverse reactions and responses to various forms of treatment and therapies to providing support for others going through similar experiences. PatientsLikeMe falls in the information cycle as Days/Weeks After Event ; as the focus of the web site is on posts and blogs from members of the consumer health information community,

7 INFORMATION SOURCES REVIEW! 7 namely those identified as medical patients in that community, the site is updated regularly with each new posting from the many members of its online community. In regards to scope, PatientsLikeMe envelops discussions on health conditions affecting medical patients all across the world. Users are able to search for other patients in similar age groups, or can search for conditions by searching specific symptoms and forms of treatment. User profiles can display as many or as few specifics in accordance with the comfort level of the user; users are able to find other patients with similar interests and conditions, and can network and find support and information from each other in this way. Additionally, information regarding health conditions, treatments, and services is provided for both context and education. PatientsLikeMe was co-founded in 2004 by MIT engineers Jeff Cole, Benjamin Heywood, and James Heywood, after the Heywoods experienced a serious illness the family. While the founders of PatientsLikeMe created the web site, much of the site is made up of contributions from users in the form of posts and message forums revolving around different health conditions; the statistics reflecting polls and surveys regarding symptoms and treatment are based on user participation. PatientsLikeMe is intended to connect patients in a way that facilitates discussion and fosters community amongst people seeking to both inquire about and contribute to consumer health information. In being focused around the experiences and subjective accounts of patients from all over the world, PatientsLikeMe can also be useful to organizations and health care professionals trying to get an idea of how they can improve services and better serve the needs of their patients. The content of PatientsLikeMe is decidedly unbiased, as the content of the site is

8 INFORMATION SOURCES REVIEW! 8 made up of the many varied and global perspectives of the members of its online community; of course, in being made up of many different perspectives and subjective experiences, one must approach the community postings on PatientsLikeUs with a critical eye and keep in mind the many inconsistencies and conflicting views when it comes to subjective experience. As a positive community-building resource, PatientsLikeMe stands as a very useful and valuable information source for the consumer health community. By providing a venue for discussion on topics that are pertinent to the consumer health information community, PatientsLikeUs brings autonomy and agency to users who not only want to know more about health information, but who also want to contribute to the conversation by sharing their own experiences. Compare and Contrast Both MedlinePlus and PatientsLikeMe provide users with pertinent and easily accessible information that benefits the consumer health information community. By providing concrete and objective material, MedlinePlus gives community members a resource rich in information that can be referred to and easily navigated when basic information, facts and statistics, or research and medical studies are needed. When information that is more rooted in the subjective experience of peers is needed, PatientsLikeMe acts as a venue for discussion and conversation that can help educate, enlighten, and provide support for fellow community members. In the case of health professionals in the consumer health community, both sources are extremely valuable; MedlinePlus serves professionals with information that can benefit their own

9 INFORMATION SOURCES REVIEW! 9 work or can be used to refer to patients who would like to find out more information from home, while PatientsLikeMe provides new insight into the experiences of patients for health professionals and health care organizations to review and use in developing new and possibly improved service methods. In reviewing these two information sources, I discovered new and exciting revelations about my chosen information community. It is very encouraging that there are such positive and well-developed resources for the consumer health information community. The strong foundations in both MedlinePlus and PatientsLikeMe as information sources that serve the community at large encourage great confidence in the endurance and stability of the consumer health information community. The concept of accessible information regarding health care has great potential to benefit society as a whole; it is inspiring to know that the consumer health information community continues to build up in the name of that concept. References Medlineplus - health information from the national library of medicine. (2015). Retrieved from Patientslikeme. (2015). Retrieved from