中文摘要
近年來拜資訊科技發展之所賜，網路社群網站發展迅速，其除可提供人們聯繫情感的功能外，更可提供相關之醫療保健資訊，並可能會影響其在衛生保健之決定。其中在醫療網路社群中，PatientsLikeMe.com(PLM)更發展出一個全新的商業模式:一個提供病友分享自己病歷的社群平台，病友們透過PLM可以相互分享彼此之病歷，進而尋找與自己症狀相似之病友並從而提高對應醫療效果。而在病友之同意下，經整理後之病友資訊，亦可提供相關醫藥公司作為其臨床治療之改善參考。此模式除被美國商業模式諮詢機構Board of Innovation評選為2010年十大震撼創業模式之一，更被譽為可能會永遠改變醫學研究的方式之一( J Gospel Net 2010年12月2日)。
本研究希望能引進PLM 網路病友會之概念，針對乳癌病友於對抗病魔時之無助與徬徨，評估此類功能對其幫助是否可行。在經過兩階段之深度訪談，我們發現病友於罹病之初期對資訊之渴望甚殷，對於其他病友也容易產生同病相憐之感覺，也願意分享病情。
經本研究之歸納分析發現:(1)乳癌病友於治療過程中，如有類似PLM網站提供其最需要之專業資訊協助與病友分享經驗，確實有用。(2)透過網路科技，確實可提供跨越時間與空間限制之平台，讓更多病友願意來分享資訊。(3)PLM網站確實能提供專業醫師或護理人員以一對一的方式回答病人的問題及進行知識分享。然而大部分病友對網路病友會仍普遍存在時間之限制、不會輸入與網路技能不熟等問題。本研究推論: 現階段網路病友會對乳癌病友需求較不可行 !

關鍵字：網路病友會、個案管理師、社群網站

Abstract
Due to the advanced development of information technology, society groups generated from internet have been in shear progress. Not only can this phenomenon establish a bridge of emotional connection, it can also provide health information and medical knowledge. Moreover, it certainly can be influential on health policy conducted by governments. Among the present medical society groups, PatientsLikeMe.com (PLM) developed an innovative business model. It built up a platform which allows patients share their own medical history. Through sharing medical history, the patients are able to discover someone else who has similar symptoms and then help to improve clinical outcome. This website may collect patients’ information under patients’ permission. After being clearly filed and analyzed, the data may be sold to medical companies or co-operated institutions for improving clinical therapy. This model has been evaluated by an American consulting institution on business model -- “Board of Innovation” --as the “Top 10 shocking Business Model of 2010”.Additionally, this model is recognized as a specific research model that may permanently change the methodology of medical research.(J Gospel Net December 2nd,2010)
With a view to evaluating the function of websites on helping breast cancer patients to overcome depression and helplessness on diseases, in this study, we would like to introduce the concept of PLM internet society groups. After two interviews on breast cancer patients, we found that the patients are desperately looking for information while the diagnosis is firstly confirmed. These patients are thereby paying deep sympathy to the ones who are also in the same shoes. Under this condition, the patients are willing to share their experience anonymously. At the same time, they only want to solve the problems that already come to the door rather than prepare in advance. Consequently, all the information is collected from the surroundings and lack of proved quality. Therefore, it is important to avoid the fear brought by the overloaded information.
From this research, we concluded that (1) during treatment, the breast cancer patients can receive professional assistance and sharing experience from PLM or similar function/ service on websites. (2)Through internet technology, it is possible to provide a platform that surpasses the limitation of both time and space and allows patients to share their personal experience and medical history. (3) PLM system opens a window that allows physicians or nurses to answer patient’s question in one-to-one manner. It is also possible for patients to share their knowledge and some tips that may not be mentioned by medical professionals. However, we also notice that most patients still have problems on using internet society groups because of time limitation, incapability of typing and being unfamiliar on internet skills etc. This research concludes that internet society groups are unlikely to fulfill the requirement of breast cancer patients.
Key Word：PatientsLikeMe.com (PLM), Case Manager, Social Networking.

目錄
謝詞 .......................................................................................................................... i
中文摘要 ................................................................................................................. ii
英文摘要 ................................................................................................................. iii
目錄 ......................................................................................................................... iv
圖次 ......................................................................................................................... vi
表次 ........................................................................................................................ vii

第一章 緒論 ...................................................................................................... 1
第一節 研究背景及動機......................................................................................1
第二節 研究目的..................................................................................................3
第三節 研究步驟..................................................................................................4
第二章 文獻探討...................................................................................................5
第一節 國民健康局醫院癌症醫療品質提升計畫........................................... 5
第二節 乳癌病患防治相關研究 .................................................................... 6
第三節 PLM社群網站探討................................................................................7
2.3.1 PLM 發展歷史.....................................................................................7
2.3.2 PLM 對病友與醫學研究之幫助 …..................................................8
2.3.3 PLM 之操作流程 ……………..........................................................9
第三章 研究方法..................................................................................................19
第一節 研究策略.................................................................................................19
第二節 資料收集.................................................................................................20
第三節 研究限制.................................................................................................21

第四章 訪談分析與結論...................................................................................23
第一節 PLM系統使用意願.................................................................................23
第二節 實體世界之情感支持與專業知識來源...............................................26
第三節 PLM使用時機..........................................................................................33
第四節 PLM系統需求..........................................................................................35
第五節 對於PLM雛型系統的看法....................................................................41
第六節 訪談結論.................................................................................................46
第五章 結論與建議.............................................................................................48
第一節 結論與建議.............................................................................................48
第二節 後續可行之方向....................................................................................48
參考文獻.............................. .......................................................................................52

附錄
附錄一 E醫院 乳癌個案管理師個案管理作業.............................................54
附錄二 訪談問卷內容........................................................................................58
附錄三 乳癌病友治療過程分享社群網站模擬畫面規劃設計(訪談時提供病友之畫面) ................................................................................................60
附錄四 受訪人員基本資料…………………………………………..............65


圖目錄
圖1: 胸懷希望(乳癌)網路病友會網站........................................................3
圖2：研究步驟..................................................................................................4
圖3: 新一代乳癌病友分享平台....................................................................51

表目錄
表一 PLM vs. 個案管理師之服務功能比較表 .........................................49

一、 中文文獻
1. 衛生署新聞稿，「99年死因統計結果分析」，2011/06/15。
2. 胡幼惠、姚美華,質性研究:理論、方法及本土女性研究實例,巨流,台北,1996.
3. 曾文兒，我國政府採購制度對醫療儀器產業發展之影響，國立中山大學企業
管理研究所碩士論文，2011/06
4. 台灣驗證基金會：2011-6-6「癌因性疲憊症過內外趨勢」座談會。
5. British Journal of community neursing Vol 15, No.5. P214~219
6. Psychological Bulletin, Vol 134(5), Sep2008,700-741
7. Psycho-oncology, 2011 Apr; 20(4);352-60
8. Seminars in oncology; 2011 Jun;38(3) 394~402
9. Breast cancer survivors: phychosocial concerns and quality of life
10. physical activity, long-term symptoms, and physical health-related quality of life
among breast cancer survivors: a prospective analysis.
11. physical activity, long-term symptoms, and physical health-related quality of life
among breast cancer survivors: a prospective analysis.
二、網路文獻
1. WHO 網站， Fact sheet N°297 February 2011
http://www.who.int/mediacentre/factsheets/fs297/en/index.html
2. 胸懷希望(乳癌)網路病友會 http://cancerfree.medicalmap.tw/
3. 邱秋員，得癌對家庭的影響與狀況，中華民國乳癌病友協會，2009/10/14
53
http://www.tbca-npo.org.tw/information_content2.asp?ser_no=167
4. Jamie Heywood: The big idea my brother inspired，feb 2010
http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_in
spired.html
5. 台灣癌症基金會 「癌因性疲憊症國內外趨勢」座談會
2011-06-16 http://blog.yam.com/tchappy