Dear Members,

You might have received a mail from PatientView, seeking input to their study on the corporate reputation of the pharmaceutical industry in 2015— from the perspective of patient groups. We also know that some of you have not received it, and would be interested in taking part. We therefore relay the information so that you can make your own decision as to whether you would or not like to take part.

Yours

Alain Cornet
Secretariat – LUPUS EUROPE

REQUEST RECEIVED FROM PATIENT VIEW:

For the 5th year, PatientView is asking health campaigners across the world to help compile the annual CORPORATE REPUTATION INDEX OF PHARMA

• The Index is taken seriously by the pharma industry as part of its efforts to become more patient-friendly.
• The results of this 2015 survey will show you how your colleagues rate the world’s various pharmaceutical companies in 2015 (whether good or bad).

About the questionnaire
The survey is open to any health advocacy organisation worldwide. Please circulate this email to any other patient groups that you think might also be interested. The survey has only 10 very simple questions, and will probably take no more than 10-15 minutes of your time to complete. The survey is anonymous, unless you prefer to specify otherwise.

To be sure your response is made in time, please complete before Monday, 18th January 2016.

To enter the survey, please click on the following live link: http://www.surveymonkey.com/r/corp-reputation-pharma-2015

To thank you for your participation in this study …

… all respondents to any PatientView study get a final copy of the resulting report (if they wish).

A brief statement of clarification

This 2015 study intends to determine how patient groups around the world perceive the pharmaceutical industry, with the aim of improving standards throughout the industry to levels that are satisfactory to patients.

The study is paid for solely by PatientView, a UK-based research and publishing group that specialises in studying trends in the patient-advocacy movement, and which passes valuable and unique information back to patient groups. All NGOs participating in the study can receive a free copy of the report on the survey results (if they wish to). PatientView funds the whole exercise by selling the report to any pharma companies that wish to read it.

Further information about PatientView reports can be found at our website: http://www.patient-view.com/bull-corp-reputation.html

After completing the survey you will be taken to PatientView’s website where you can see press releases for the corporate reputation studies conducted for 2014

Contact details for this study: Alexandra Wyke, CEO, PatientView. Email: alexwyke@patient-view.com

PatientView UK
Tel: 0044-(0)1547-520-965
E-mail: info@patient-view.com
www.patient-view.com
Registered in England Number: 3944382
Registered office:
One Fleet Place London EC4M 7WS

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1 week ago
LUPUS EUROPE

During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients.

Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study.

Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients.

The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’.

Furthermore, we conducted a follow-up survey that showed the following:
1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access.
2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’.

In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients' experience & state of mind as well as to objectify emerging signals of new shortages in Poland.

This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern.

How did hydroxychloroquine affect you?
Did you feel anxiety during that period?
Did your physician warn you about the shortage and advised you on what to do?

lupus.bmj.com/content/10/1/e000895
... See MoreSee Less

During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients. 

Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study. 

Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients.

The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’.

Furthermore, we conducted a follow-up survey that showed the following:
1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access.
2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’.

In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients experience & state of mind as well as to objectify emerging signals of new shortages in Poland. 

This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern. 

How did hydroxychloroquine affect you? 
Did you feel anxiety during that period?
Did your physician warn you about the shortage and advised you on what to do?

https://lupus.bmj.com/content/10/1/e000895Image attachmentImage attachment+3Image attachment
1 week ago
LUPUS EUROPE

Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023!

The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology.

The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”.

Learn more about this competition:

www.eular.org/pare-stene-prize📣 Meet the 2023 #EULAR Edgar Stene Prize Jury!

🏆 The call for essay submissions have now closed and winners will be announced on 15 March!

Learn more about the #EULARStenePrize here 👉 pulse.ly/wforpnid8f

Register to #EULAR2023 👉 pulse.ly/r1xt9zca9p
... See MoreSee Less

Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023!  

The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology.

The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”.

Learn more about this competition:

https://www.eular.org/pare-stene-prize
1 week ago
LUPUS EUROPE

Sara, our Patient Advisory Network (PAN) coordinator, invites you to take part in our #kicklupus competition.

Remember that you can participate by sending your testimonial in your own language to zoe@lupus-europe.org.

Let's tell the world how volunteering for a #lupus organisation has helped change our life!

This competition is open only to people living in Europe with a diagnosis of lupus who are volunteers in a European Lupus organisation.
... See MoreSee Less

1 week ago
LUPUS EUROPE

Oh wow 🤩!

Due to unforeseen circumstances, we have 2 spots left for our Senior Panel!

If you live in Europe and have been diagnosed with #lupus before 2000, don't think twice and come to Barcelona with us!

The deadline for applications is this Friday!

Watch the video to make sure you fulfil the requirements and get to know more about this exciting opportunity!
... See MoreSee Less

LUPUS EUROPE Uniting people with Lupus throughout Europe
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