研究題目

新冠長期症狀數碼自我管理計劃

 

研究背景及重要性

新冠長期症狀是一種異質、多系統、復發和緩解的疾病,無論最初 COVID-19 的嚴重程度如何,都會影響 COVID-19 患者。眾所周知,新冠長期症狀患者可能會出現廣泛的症狀,這些症狀可能會在最初的 COVID-19 發作後持續、波動或復發,或者可能在急性 COVID-19 消退後重新出現。對於受影響的患者,這些長期症狀與殘疾和頻繁的醫療保健使用有關。

鑑於香港新冠長期症狀患者的健康和社會負擔沉重,賽馬會已委託多個非政府組織(NGO)提供健康和社會服務計劃,以滿足這些患者的需要。作為針對這種新型疾病設計的新服務,有必要評估它們對患者的影響,這將為未來的服務改進提供信息。香港中文大學將與三個非政府機構合作進行此次評估:聖雅各福群會、香港復康會和基督教靈實協會。

儘管目前有國際指引,但仍缺乏針對香港人口文化上合適的的網上中文新冠長期症狀自我管理計劃。為應對這一巨大的健康需求,中大為此目的開發(i)一個網站和(ii)一個應用程式。該應用程式的目的是確保患有新冠長期症狀的人士都可以查詢及使用支持康復過程的網上自我管理計劃,並為患者提供適當的健康護理。

 

研究目的

根據國際最佳做法,創建香港文化適宜的中文新冠長期症狀自我管理計劃網站和應用程式。

 

研究計劃內容

這項研究將預計30,000新冠長期症狀患者註冊使用本計劃的網站或應用程式,並通過本計劃的網站或應用程式網上評估自我管理新冠長期症狀。

同意參與這項研究的參加者將須要註冊使用本計劃的網站或應用程式。本計劃的網站及應用程式會收集參加者的個人資料包括姓名、聯絡電話、電郵地址及居住地區等等。也會詢問參加者有關新冠肺炎的經驗,及對治療和本計劃的期望。參加者於本計劃的網站或應用程式中的活動將會被記錄,作整體統計分析之用。最後所有參加者將被邀請以電子方式填寫滿意度問卷調查。

 

參與研究的影響

此項研究將創建香港文化適宜的中文新冠長期症狀自我管理計劃網站和應用程式。

 

自願參與 / 中途退出

是次研究的參與屬自願性質, 閣下有權選擇是否參與。 即使簽署了<參加者同意書>, 閣下亦有權拒絕回答問卷中任何問題,或隨時退出是次研究,而絕對不會影響 閣下現享有的醫療服務及法律權益。

 

報酬及費用

研究人員不會向閣下索取任何費用。300名於網站(首150名)和於應用程序(首150名)完成滿意度問卷調查的參加者將會獲得$300超級市場現金券作為報酬。

 

保密性

閣下所提供的個人資料均會絶對保密,並只會用作整體統計分析及報告之用,個別人士的身份絕不會被披露。本調查收集的所有個人資料將從研究計劃完結之後儲存7年,之後全數銷毀。

 

有需要的話,每位研究參與者都有權利獲得其個人的數據以及公開報告的研究結果。

根據香港法律(特別是「個人資料(私隱)條例」,第486章),閣下有權對您個人資料進行保密,如在本項研究中或與本項研究有關的個人資料的收集、保管、保留、管理、控制、使用(分析或比較)、在香港內外轉讓、不披露、消除和/或任何方式處理。如有任何問題,閣下可以諮詢隱私資料私隱專員或致電到其辦公室(電話號碼:2827 2827),以適當監管或監督 閣下個人資料保護,以便  閣下能完全認識和瞭解確保遵守法律保護隱私資料的意義。

 

本研究負責人為黃仰山教授(Prof. Samuel Wong電郵:yeungshanwong@cuhk.edu.hk),如有任何查詢,歡迎致電鍾志豪教授 (Prof. Chung Chi Ho, Vincent 電郵:vchung@cuhk.edu.hk)。

 

同意參與該項研究,閣下明確作出以下授權:

•         為了監督該項研究,授權主要研究者及其研究團隊和倫理委員根據本項研究和本知情同意書規定的方式獲得、使用並保留您的個人資料,並且

•         為了檢查和核實研究資料的完整性、評估研究協定與相關要求的一致性,授權相關的政府機構(如香港衛生署)可獲得您個人資料。

 

感謝您考慮參與這項研究和問卷調查。如有任何有關研究倫理的問題,您可以聯絡香港中文大學調查及行為研究操守委員會查詢,電郵:fssc02@cuhk.edu.hk。

 

參加新冠長期症狀數碼自我管理計劃同意書

 

本人已經閱讀<參加者須知>內有關此研究計劃之詳情,清楚了解計劃之一切程序,亦明白本人的約定及承擔。

本人明白以下項目:

  1. 是次研究計劃的目的、方法及資料運用;
  2. 此同意書的內容;
  3. 所有收集得來的資料將由研究員保管,絕對保密,並且只作研究之用;
  4. 所有參加者的身份不會被公開;
  5. 本人有權隨時退出此研究計劃,而絕對不會影響本人現享有的醫療服務及法律權益。

 

 

你是否自願參加新冠長期症狀數碼自我管理計劃

 

Research topics

Digital self-management program for long-term symptoms of COVID-19

 

Research background and importance

Long-term COVID-19 symptoms are a heterogeneous, multisystem, recurrent and remitting disease that affects people with COVID-19 regardless of the severity of the initial COVID-19. It is well known that patients with long-term COVID-19 symptoms may experience a wide range of symptoms that may persist, fluctuate, or recur after the initial onset of COVID-19, or may recur after acute COVID-19 resolves. For affected patients, these long-term symptoms are associated with disability and frequent use of health care.

In view of the heavy health and social burden on patients with long-term symptoms of COVID-19 in Hong Kong, the Jockey Club has commissioned a number of non-governmental organizations (NGOs) to provide health and social service programmes to meet the needs of these patients. As new services designed for this new disease, it is necessary to assess their impact on patients, which will inform future service improvements. Chinese University of Hong Kong will work with three non-governmental organisations to conduct the assessment: St. James's Society, The Hong Kong Rehabilitation Society and the Christian Spiritual Association.

Despite the current international guidelines, there is still a lack of self-management schemes for the culturally appropriate online Chinese of long-term symptoms of COVID-19 for the Hong Kong population. In response to this huge health demand, CUHK has developed (i) a website and (ii) an application for this purpose. The aim of the app is to ensure that people with long-term symptoms of COVID-19 can access and use the online self-management plan that supports the recovery process and provide appropriate health care to patients.

 

Purpose of the study

Create a website and application of the Hong Kong Culturally Appropriate Chinese Long-term Symptoms Self-Management Scheme based on international best practices.

 

Research plan content

The study will expect 30,000 patients with long-term COVID-19 symptoms to register for the Program's website or application and assess self-management online through the Program's website or app Long-term symptoms of COVID-19.

Participants who agree to participate in this study will be required to register for the program's website or application. The Websites and Applications of the Programme collect personal data of Participants, including name, contact number, email address and area of residence. Participants will also be asked about their experience with COVID-19 and their expectations for treatment and the programme. Participants' activities on the Website or App of the Programme will be recorded for aggregate statistical analysis. Finally, all participants will be invited to fill out the satisfaction questionnaire electronically.

 

The impact of participating in research

This study will create a website and application of the Hong Kong Culturally Appropriate Chinese Long-term Symptom Self-Management Scheme.

 

Voluntary participation /halfway exit

Participation in this study is voluntary and you have the right to choose whether or not to participate. Even if you sign < participant consent form >, you have the right to refuse to answer any questions in the questionnaire or withdraw from the study at any time, without affecting your current medical services and legal rights.

 

Remuneration and Fees

The researcher will not ask you for any fees. 300 on the website (first 150) and in the app (first 150) completed Participants in the satisfaction questionnaire will receive a $300 Supermarket Cash Coupon as payment.

 

confidentiality

The personal data provided by you will be kept strictly confidential and will only be used for aggregate statistical analysis and reporting purposes, and the identity of the individual will never be disclosed. All personal data collected in this survey will be stored for 7 years from the end of the research programme and then destroyed in its entirety.

 

Where necessary, each study participant has the right to access their own personal data as well as publicly reported findings.

In accordance with the laws of Hong Kong (in particular the Personal Data (Privacy) Ordinance, Cap. 486), you have the right to keep your personal data confidential, such as the collection, storage, retention, management, control, use (analysis or comparison), transfer, non-disclosure, erasure and/or processing of personal data in or in connection with this study. If you have any questions, you may consult the Privacy Officer or call their office (telephone number: 2827 2827) to properly regulate or supervise the protection of your personal data so that you can fully understand and understand the significance of ensuring compliance with the law to protect your private data.

 

The study was led by Prof. Samuel Wong (email: yeungshanwong@cuhk.edu.hk), if you have any enquiries, please feel free to call Prof. Chung Chi Ho (Prof.  Chung Chi Ho, Vincent Email: vchung@cuhk.edu.hk).

 

By agreeing to participate in the study, you expressly authorise the following:

• To oversee the study, authorise the lead investigator and their research team and ethics committee to obtain, use and retain your personal data in the manner set out in this study and this informed consent, and

• In order to check and verify the completeness of the research data and assess the consistency of the research agreement with the relevant requirements, authorise the relevant government agency (e.g. the Hong Kong Department of Health) to obtain your personal data.

 

Thank you for considering participating in this study and questionnaire. For enquiries regarding research ethics, please contact the Survey and Conduct Research Conduct Committee of the University of Chinese Hong Kong at fssc02@cuhk.edu.hk.