Background: As part of the ongoing professionalisation of patient organisations and the expansion of their activities, their need for financial resources keeps increasing. This is often met by pharmaceutical companies. In order to make these money transfers more transparent, the pharmaceutical industry has responded with voluntary commitments to greater transparency. The LBI-HTA conducted a systematic analysis of the published data in 2014 and is aiming to continue the consequent monitoring of these payments. The research question underlying this second update of the systematic analysis for the year 2016 was, to what extent patient initiatives in Austria received financial support from pharmaceutical companies in the year 2016.

Method: Again, the websites of all PHARMIG member companies (as of July 4-13, 2017) were examined for information regarding financial support for patient organisations in the year 2016. The collected data was thereafter grouped according to pharma companies, patient organisations and fields of diseases.

Result: 40 of 118 PHARMIG member companies have declared donations to patient organisations for the year 2016. The verification of this information on the websites of patient organisations was of limited success. A total sum of € 1,435,059 in grants to patient initiatives was reported by the PHARMIG member companies. Most grants (72%) were given to initiatives in the five fields of Oncology & Haematology, Neurology, Lung, Haemophilia, and Rheumatology. The biggest contribution to a single organisation by far was again given to the Austrian Haemophilia Society with € 213,550; the Multiple Sclerosis Trust came second with € € 109,338 received. After the significant increase in disclosure from 2014 to 2015 with plus 12 companies declaring financial contributions, the increase in 2016 diminished to only plus 4 companies. The total sum of declared contributions on the other hand decreased by almost 20% from 2015 to 2016 - to be explained partly by the elimination of the category "Other" (charitable initiatives: Caritas) - while it has increased between 2014 and 2015 by 50%. Individual patient initiatives show very high growth rates in donations (+ 50 to + 1,000% 2014 compared to 2016).

Conclusions: The pharmaceutical companies in Austria have taken an important first step towards greater transparency, but a second step, an improved implementation needs to follow. Consistent monitoring by a critical public is required to further advance transparency.