Social Website Paper, Term Paper Example

This paper will explore health social media sites and their coverage of chronic obstructive pulmonary disease COPD. The three web sites selected for this assignment are: 1) “COPD Wiki” (http://en.wikipedia.org/wiki/Chronic_obstructive_pulmonary_disease); 2) National Jewish Health Center – COPD (http://www.nationaljewish.org/healthinfo/conditions/copd/index.aspx); 3) COPD Support Groups (http://copd.supportgroups.com/).

Chronic Obstructive Pulmonary Disease (COPD) http://en.wikipedia.org/wiki/Chronic_obstructive_pulmonary_disease

In order to understand how this Wiki web site (Chronic Obstructive Pulmonary Disease) provides information to potential patients, I undertook an examination of the site’s information, sources, and general interface. Regarding the issue of credentials or sourcing, the Wiki site is certainly not readily transparent in this aspect.  That is, while a patient may be able to understand the credentials of a noted writer/expert  on a hospital or other health care web site (especially if the writer is identified), the anonymous nature of the Wiki enterprise does not allow patients to identify the writer, let alone his/her credentials.  This is certainly a negative of using the Wiki website, and its purported expertise in any area.  The anonymous nature of the Wiki web site also hurts the ability to validate information on the site.  Although Wiki sites in general are required to have some type of footnote as a reference, this is not necessarily the case for all web sites.  The entry for information related to COPD on the website is well documented; that is, in addition to the 65 footnotes provided, there is a full citation for the journal article and even the website provided to access the information.  The accuracy of the information provided is a bit more difficult to ascertain.  Judging from the general overview of the Wiki web site, the main goal of the page is not intended to provide in-depth information regarding treatment or potential treatment options of the disease, but rather,  to give a basic understanding of the symptoms and the biological mechanism that underpins the disease.  In this aspect, the information provided is quite accurate in its explanation of how COPD develops in the lung , the biological mechanism of disease, etiological causes of the disease, and the reduction of certain risk factors in patients.  One of the good things of the Wiki web site is the clear information given regarding when the website was last modified; although there is no information about when the web site was initially created.

Although Wiki claims to be an “objective” source of information, that claim is only as valid as the people who write and edit the site.  Because Wiki is either unwilling or unable to provide the names of those that work on certain entries, it is impossible for individuals who want to keep them accountable for misinformation. For all we know, and due to the need for specific medical knowledge and medical research skills in these articles, they were written by medical or pharmaceutical personnel with an explicit agenda that is not related to the education of patients.  The web site is easy to navigate: overall, the entry is short and easy to read, particularly because there are numerous headings detailing not only where basic information, causes, and risk factors can be found, but also valuable information can be found in entries for footnotes.  The intended purpose and audience is for general members of the public who want to learn about COPD; I don’t think the web site is necessarily built for professional use due to the lack to excessive footnoting commonly found in medical literature reviews.  Perhaps the most worrying feature about the Wiki site is that there are no explicit notifications or textual signs for individuals that qualify what this particular information is about.  This is particularly worrying because the site is used extensively by the general public, and might be a main source of information for individuals who discuss potential treatments with their doctor.  Finally, the site is accredited by the general Wiki enterprise, and there is no explicit privacy agreement given on the web site.

Shepard (2010) in her article details a typical nutritional approach to dealing with COPD.  In particular, Shepard identifies malnutrition as a key etiological element in the further development of COPD; indeed, nutritional depletion in patients with COPD is common and has a negative impact on respiratory and peripheral muscle function (Shepard, 2010). In order to deal with this problem, the article gives a number of evidence-based suggestions including providing foods fortified in certain vitamins to the nature of food, and the method of drinking and eating.  This approach is echoed by Jonsdottir (2010) who states that nutrition can play a key role in the treatment of individuals with COPD.

When comparing these articles’ identification and treatment of nutrition to the Wiki page, there is a palpable difference. While the medical literature obviously adopts an extensive and comprehensive approach to describing the role of nutrition (both as a risk factor and a potential treatment), the Wiki page roughly contains two sentences on the topic: “Being either underweight or overweight can affect the symptoms, degree of disability and prognosis of COPD. People with COPD who are underweight can improve their breathing muscle strength by increasing their calorie intake.”  While there is a substantial difference between the two sources, I don’t believe that Wiki is incorrect in only having a one to two sentence explanation. Because Wiki serves as a general reference material, it can only provide a basic introduction to the aspects of better nutrition in COPD patients.  In addition there is a footnote that can direct an individual to additional resources.

National Jewish Health Center – COPD (http://www.nationaljewish.org/healthinfo/conditions/copd/index.aspx)

In order to explore a site focused on education, I chose the COPD page from the National Jewish Health Center, a well-known lung and respiratory center in Denver, Colorado.  Overall, the credentialing of the National Jewish Center is quite good: not only does the web site clearly indicate the information is from the National Jewish Health Center, but it also gives the names of the doctors (and contact information) of those who have directly reviewed the site.  The ability to validate information is somewhat different than Wiki or other sites, this is primarily because the National Jewish Health Center relies on internal expertise to produce the site, and thus doesn’t use copious footnotes or references like other sites (note: there are footnotes and references available on the site; however, it takes a while to find them.)

The comprehensiveness of the site’s information resources are impressive: There are a total of nine categories covering every aspect of COPD including: symptoms, diagnosis, associated conditions, treatment, lifestyle management, emotional management, life skills tutorial, FAQ, and additional resources.  These categories cover every aspect of information an individual could want to know about.  There is a clear date posted on the page (12/09) regarding the last date the web site was checked by the hospital.  There may be an issue of bias or sponsorship depending on an individual’s perception of hospital and other care centers.  That is, one might feel that a hospital’s information page is given to lead to potential treatment (with a button to make an appointment also on the page); however, I didn’t have that feeling when checking information for this site.  One thing that could be improved on for the current site is the navigation.  Indeed, I originally thought that the site lacked information because I could not find the other web tabs regarding information related to COPD.  Instead of having a small web bar on the side, the site might be better served through having an outline on the first page that alerts individuals to the totality of resources on the web site.

The intended purpose of the site is to clearly give information to patients regarding COPD.  There is a bar on the right side of the web site that gives a basic breakdown of what information is provided.  There could be a strong disclaimer on the site between fact and opinion: Although there is somewhat of a natural break to understand opinion versus fact in the use of medical literature citation, there is no explicit statement of this division located on the web site.  The site is accredited by the National Jewish Health Center; there is no other accreditation available on the web site.  There are no perceived issues with privacy related to the site.

The National Jewish Health Center web site provides a robust introduction to nutrition as a means to treat COPD.  Indeed, under the “lifestyle management tab”, there is a page dedicated to the importance of nutrition in the treatment in COPD- the site even provides detailed advice on what foods and vitamins are vitally important in this respect.  The site’s treatment of nutrition was far superior to Wiki, and this is to be expected: The National Jewish Health Center is a preeminent institution using this information as a symbol of its knowledge and experience in the treatment of COPD.  The detailed information given on nutrition for COPD, and other treatments, is meant to establish these credentials while Wikipedia is meant as a more general source of information.  I would prefer patients go to a more robust information source (such as that provided by the National Jewish Center) than a more general site than Wikipedia- this is because I think there is a greater chance for misunderstandings with more general and less detailed information.

COPD Support Groups (http://copd.supportgroups.com/)  

I chose the COPD support group, a website affiliated with supportgroups.com, in order to better understand the information being disseminated in these communities.  Overall, there are two types of information given the community: 1) inspirational support; 2) treatment and coping advice.  The inspirational advice is primarily from COPD survivors and COPD individuals sharing their experiences with others.  There is not a lot of technical medical information exchanged in these types of messages.  The other type of message, however, in which technical information (or a reliable proxy) is related does not seem to adhere to any standards.  Indeed, while talking about symptoms is one thing, there are generalizations about what type of symptoms warrant treatment and what type of treatment may be best for COPD.

The operation of this support group seems to be quite informal in nature; there is no real ownership of the community (or directly responsible individual) and most of the members seem to come and go as they please.  In addition, I can’t see participation by any medical personnel, at least explicitly on the board.  I don’t see much of an issue regarding the exchange of inspirational greetings regarding the disease and how to cope with the disease, however, there should probably more rigorous refereeing, particularly by the site’s owner, regarding some of the advice given on the board.  A more explicit disclaimer regarding the nature of the site would also be appreciated. I would be hesitant to recommend this resource to clients, primarily because of the information that is regularly given without a proper scientific context.  At the same time, I am aware that coping strategies, particularly for tough to treat diseases like COPD, are very important for a patient’s psychological health.  Thus, I would be willing to recommend use of a support group site to a patient on the following condition: I would tell the patient that finding others to discuss symptoms is ok, and could be an important factor in maintaining strength.   However, I would also place a disclaimer on that advice telling the individual not to seek medical advice on the site or give any advice based on their condition.  While I see a need for such sites, I think medical professionals have to be clear with their patients regarding what type of information is accurate and not accurate on these types of sites.

Conclusion

Although I was fairly familiar with the etiological framework and the symptoms/ treatments of COPD, I was certainly able to learn more about treatments of COPD- particularly regarding nutrition and other related treatments.  Overall, I think that social media is an important medium to provide information to patients, who may not have a basic idea of the disease or the biology or treatment associated with the disease.

I can’t say that I explicitly learned any new medical information that I was not aware of beforehand, however, I did learn a lot about how social media sites choose and present information to patients.  In particular, while I previously thought Wiki might be a decent tool to give patients an idea about certain concepts in easy to understand language, I would hesitate to do that now.  Instead, I would point my patients to a site affiliated with a hospital or research unit: Although the language might be a bit harder to understand, I think those sites do a better job of providing a comprehensive and objective picture to the client.

I also think that nurses need to take the initiative with patients discussing web sites where patients can give more information, and indicate that I would be willing to answer more questions if the patient had them.  If nurses aren’t proactive in this regard, I feel that individuals will seek out information anyway, and might not seek out the most reputable form. In teaching this information to patients I would stress the following three ideas: 1) Seek out a comprehensive information source; 2) Look at different sources of information; 3) Ask questions of medical professionals.

First, individuals need to seek out a comprehensive information source that will provide them with the full range of information to make important medical decisions. This needs to be emphasized as the initial principle in responsible decision making.  Second, I would encourage the patient to look at different web sites in order to get a feel for different presentations of information and data.  I think as professional medical personnel, we have to be objective and realize that people process information differently.  In addition, if we only support our hospital’s site, I think that individuals may question whether we truly have the best intentions for our patients.  The last point I would emphasize is: encourage patients to ask questions about the information they find and are not sure of.  I think actually think this is the most important part of the entire process because social media can actually function as a robust tool to improve the relationship between patients and medical personnel- that is, by starting an informed conversation about the facts of the disease and potential treatment options.

Overall, I am quite impressed with the number and quality of health care information resources on the Internet.  Often times the media presents the “dangers” of poor or misguided medical information found on the Internet: this risk certainly exists, however, I don’t believe it is as large as many would like us to believe.  In addition, by having a fully informed discussion on the merits of the information, we also help draw boundaries for practices that are and are not useful for patients.

References

Shepard, A (2010).  The nutritional management of COPD: an overview. British Journal of Nursing. 19(9), 559-662.

Jonsdottir, H (2008). Nursing Care in the chronic phase of COPD: a call for innovative disciplinary research. Journal of Clinical Nursing. 17(7), 272-290.