PUBLICATION DATE: MONDAY, JULY 27th, 2020

~ Contact: Alex Wyke ~ Tel: +44-(0)7960-855-019 ~ Email: report@patient-view.com

This is the 4th edition of 'The Corporate Reputation of Pharma - from the Perspective of Bleeding-Disorders Patient Groups'. These 2019 results are drawn from a survey of bleeding-disorders patient groups, conducted November 2019 - February 2020.

About the 2019 survey of bleeding-disorders patient groups

2019’s 52 respondent bleeding-disorders patient groups came from 28 different countries (with the highest representation from Russia, at 13 bleeding-disorders patient groups).
The 52 respondent bleeding-disorders patient groups had the following geographic remits: 6% an international remit; 50% a national remit; 29% a regional (within one country); and 14% local.

On the relationships that bleeding-disorders patient groups had with pharma, 2019

73% of the 52 bleeding-disorders patient groups responding to the 2019 survey worked with at least one pharma company.

The 9 companies included for assessment in the 2019 bleeding-disorders 'Corporate-Reputation' analyses (in alphabetical order):

A note about COVID-19 and the 2019 study’s results

Covid-19 should have a relatively limited impact on many of the results of the PatientView 2019 ‘Corporate-Reputation’ study, because the survey took place (November 2019 to late-February 2020) largely before the crisis became global. However, early announcements about Covid-19 by some pharma companies (during January and February 2020) may have influenced the views of bleeding-disorders patient groups responding to the ‘Corporate-Reputation’ survey during those last two months of the survey.

What this report contains

Industry-wide analyses: The 2019 bleeding-disorders 'Corporate-Reputation' report examines the issues of importance to bleeding-disorders patient groups, including:

• levels of industry innovation; • provision of high-quality products; • access to treatments; • transparency of the industry; and • drug pricing.

Analyses are reinforced by extensive comments from 2019’s respondent bleeding-disorders patient groups [Appendix I], organised according to the country headquarters of the respondent patient groups.

Individual company analyses: The 9 pharma companies are reviewed by 2019’s 52 respondent bleeding-disorder patient groups for overall corporate reputation, and for performance at 12 individual indicators of corporate reputation.

The 12 indicators used to measure corporate reputation from a patient perspective

Key industry-wide findings for bleeding disorders, 2019

Despite expressing a generally-positive attitude to the pharma industry, 2019's respondent bleeding-disorders patient groups do demonstrate signs of concern about pharma’s performance. Patient groups specialising in bleeding disorders generally hold a more positive view of the pharmaceutical industry than patient groups of other therapy areas. As many as 65% of 2019’s 52 respondent bleeding-disorders patient groups judged the industry to have an “Excellent” or “Good” corporate reputation that year [see chart, below]. Their positive attitude to the pharmaceutical industry in 2019 was up from that of 2018, when the equivalent figure was 50%.

Percentage of respondent patient groups from different therapy areas stating that the pharmaceutical industry as a whole had an “Excellent” or “Good” corporate reputation, 2019

Although the respondent bleeding-disorders patient groups expressed appreciation that the industry was able to produce treatments which allowed patients with bleeding disorders to live a much-more normal life than they would otherwise, these patient groups also seemed increasingly unsure whether the industry could carry on creating new effective products for their therapy area. 68% of 2019’s respondent bleeding-disorders patient groups judged the pharma industry “Excellent” or “Good” at providing high-quality products of benefit to patients. Though high, the figure was significantly down from 2016’s equivalent of 86%. Similarly, 68% of 2019’s respondent bleeding-disorders patient groups regarded pharma as “Excellent” or “Good” at innovation—down on the 77% of 2016.

Respondent bleeding-disorders patient groups observed declines in pharma’s performance at many activities since 2016. Worst, according to them, was the pharmaceutical industry’s levels of patient centricity. The industry’s record at this indicator of corporate reputation has fluctuated significantly among respondent bleeding-disorders patient groups since 2016. In 2019, only 38% of the 52 respondent bleeding-disorders patient groups called the pharma industry “Excellent” or “Good” at being patient centric. The equivalent figure in 2018 was 56% [see chart below].

Another significant drop was noted for patient safety. In 2019, 51% of the respondent bleeding-disorders patient groups stated that pharma was “Excellent” or “Good” at this activity. The figure has been steadily declining since 2016, when 69% of respondent bleeding-disorders patient groups stated the same [see chart below].

Percentage of respondent bleeding-disorders patient groups stating that the pharma industry was “Excellent” or “Good” at being patient-centric, and at ensuring patient safety, 2016-2019

Pricing, transparency, and access to medicines, 2019

Fair pricing policies. In 2019, only 9% of the respondent bleeding-disorders patient groups stated that pharma was “Excellent” or “Good” at this activity.
Transparency in pricing policies—the equivalent figure from 2019’s respondent bleeding-disorders patient groups was 20%.
Ensuring access to medicines—the equivalent figure was 32%.

The comments provided to the 2019 survey by respondent bleeding-disorders patient groups highlight several reasons as to why the bleeding-disorders patient-advocacy community is becoming increasingly uncertain about the value of the pharmaceutical industry. These patient groups stipulated a number of areas of need.

Research and development should include the rare forms of bleeding disorders

According to the Federação Brasileira de Hemofilia [Brazilian Federation of Haemophilia] (FBH):
“As empresas farmacêuticas devem apresentar-se ao nosso país e órgãos governamentais com propostas de estudos clínicos que auxiliam no desenvolvimento de medicamentos para proporcionar melhor qualidade de vida e segurança às pessoas com Hemofilia A e B, von Willebrand e outras coagulopatias hereditárias.”
(“Pharmaceutical companies need to present our country and government bodies with proposals for clinical studies that aid in the development of drugs to provide better quality of life, and safety for patients with haemophilia A and B, von Willebrand disease, and other inherited bleeding disorders.”)

Patient expectations need to be better managed, by providing more-robust patient information

According to a national haemophilia patient group based in China:

“对于药品前沿的研究，能够有更多医学信息披露，现在这方法的“合规”信息很少。影响患者治疗观念，了解治疗方法，治疗药物情况，对于患者增加知情。特别是罕见病患者，更为重要。”
(“With regard to cutting-edge drug research, they could release more medical-research data. Currently, very little ‘compliant’ data in this regard. Influencing patients’ concept of treatment, and understanding treatment methods and drugs, making patients more informed. This is especially important for patients with rare illnesses.”)

Key company findings for bleeding disorders, 2019

9 companies are included in the bleeding-disorders analysis of 2019’s ‘Corporate-Reputation’ results. The companies are ranked for their performance at 12 individual indicators of corporate reputation, as judged by respondent bleeding-disorders patient groups familiar with the companies.

Roche/Genentech was ranked overall 1st out of 9 companies for corporate reputation in 2019 by the 46 respondent bleeding-disorders patient groups familiar with the company. Roche/Genentech was also ranked 1st for 9 of the 12 individual indicators of corporate reputation. Roche/Genentech was ranked overall 1st for corporate reputation in 2019 out of 7 companies, as judged by its 24 respondent partner bleeding-disorders patient groups.

Takeda/Shire was ranked overall 2nd out of 9 companies for corporate reputation in 2019 by the 43 respondent bleeding-disorders patient groups familiar with the company. Takeda/Shire was ranked 1st for three of the 12 indicators of corporate reputation.

Pfizer was ranked overall 3rd out of 9 companies for corporate reputation in 2019 by the 36 respondent bleeding-disorders patient groups familiar with the company—a jump of two places from Pfizer’s 2018 overall ranking.

Comparing just the largest pharma companies (‘big pharma’), 2019 v. 2018 To enable peer-to-peer comparisons of the results, PatientView recalculates overall rankings for the 12 indicators of corporate reputation for just the very-largest, multinational, multi-therapy pharma companies included in the bleeding-disorders analyses. These ‘big-pharma’ results provide a different perspective on how the largest pharmaceutical companies fare for corporate reputation—enabling true peer-to-peer analyses.

For further information on PatientView's latest publication, ‘The Corporate Reputation of Pharma—from the Perspective of Bleeding-Disorders Patient Groups, 2019’, please use the contact details at the top.

To download the publication's contents, list of tables and charts, and sample materials, please click below:

LINK TO SAMPLE PAGES OF 2019's BLEEDING DISORDERS ANALYSIS

~END OF NOTIFICATION~