HULL POZIVA NA SUDJELOVANJE U GLOBALNOJ ANKETI O LIMFOMIMA I CLL-u LYMPHOMA COALITION 2022.

Hrvatska udruga leukemija i limfomi poziva članove da ispune Globalnu anketu pacijenata o limfomima i CLL-u Lymphoma Coalition (Koalicije o limfomima) 2022. Takva anketa provodi se svake dvije godine, s ciljem boljeg razumijevanja pacijenata i njihovih skrbnika, kao i otkrivanja trendova. Točnije, anketa u 2022. istražit će kako pacijenti i njihovi skrbnici sudjeluju u njezi.

Anketa se zatvara 31. ožujka 2022. i dostupna je na 19 jezika. Poveznica na anketu nalazi se ispod teksta.

Kada barem 100 ljudi iz jedne zemlje popuni anketu, izradit će se detaljno izvješće koje naglašava nalaze, koji se mogu koristiti u lokalnom planiranju. Dodatno, Lymphoma Coalition daje organizaciji podatke potrebne za odobrenja terapija i slično.

Prikupljene informacije pomoći će u poboljšanju skrbi na globalnom i lokalnom nivou, stoga vas molimo da se uključite u ovo istraživanje, bilo kao pacijenti ili njegovatelji.

Poveznica na anketu:  survey link .

Dear Members,

It’s that time again. We invite you to join us as we launch the 2022 Global Patient Survey on Lymphoma & CLL. 

The Global Patient Survey (GPS) is conducted every two years and aims to deeply understand the patient and caregiver experience as well as uncover trends, themes, and geographic variation. Specifically in 2022, the survey will explore how patients and caregivers participate in care.

February 2022
10
The GPS will open 10 February 2022 and is targeted to close 31 March 2022.
Link to Survey
The survey is available in 19 languages including:
  • English
  • Arabic
  • Bulgarian
  • Chinese
  • Danish
  • Dutch
  • Finnish
  • French
  • German
  • Hindi
  • Italian
  • Japanese
  • Korean
  • Lithuanian
  • Portuguese
  • Serbian
  • Slovak
  • Spanish
  • Swedish
There is one survey link The survey software recognises the browser language of the user and opens the survey in a matching language. If you want to change the language once you have the survey open, it is easy to do using the dropdown menu.

Toolkit
It is through partnerships with member organisations that we can successfully gather the experiences and insights of patients and caregivers around the world. To help make the information easy to share with your community and increase the number of people who participate, a toolkit of materials has been created.  In this tool kit you will find: 

•    3 templated emails to share with your community (#1 launch, #2 reminder and #3 final reminder)
•    Templated newsletter copy to share in your organisation’s newsletter
•    Templated web copy to post on your website
•    Social media posts to use on Facebook, Instagram, Twitter and LinkedIn, etc.
•    GPS wordmarks in each of the languages.

All the materials can be found here (you need to log in to view them). They are available in the same 19 languages as the survey.

We hope you will help encourage patients and caregivers in your region to complete the survey.  

When 100 or more participants complete the survey from one country, (or subtype if your organisation is subtype specific), a detailed report will be created that highlights the findings, which can be used for local planning and other advocacy efforts.  In addition, Lymphoma Coalition can support your organisation with data needed for therapy approvals and other efforts as needed.

Timeline
We’ve created the following suggested timeline to help you use the materials in the toolkit and guide your communications about the Global Patient Survey on Lymphoma & CLL.

Suggested ActionDate
Send introduction email #1  Thursday, February 10
Post on social media channels (Post #1)  Thursday, February 10
Update website with GPS informationThursday, February 10  
Post on social media channel (choose from suggested posts or create your own)  Week of February 21

Send reminder email #2

 
Week of March 7
Post on social media (choose from suggested posts or create your own)  Week of March 14
Post on social media (choose from suggested posts or create your own)  Week of March 21
Send final reminder email #3Week of March 28  
Post on social media (choose from suggested posts or create your own)  Week of March 28
Post final reminder on social mediaWeek of March 31  

If anyone has any questions on the survey, please contact Funmi. You can also contact Funmi if you hear of anyone having difficulty accessing or filling out the survey. When bringing forward any issues, it would help to have detail about the language being used, the question where the difficulty was encountered, and a screenshot if possible. The survey is quite complex, and this will help narrow down where edits need to be made.

If you have questions about the toolkit, please contact Mikaela.

As in previous years, we will send weekly updates on the number of GPS respondents. Looking forward to another successful result, thanks to your help and support.

Kind regards,


 Lorna Warwick
Chief Executive Officer
www.lymphomacoalition.org

 
 

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