WEBSITE: Take a look at the new website for the unique project "European Patients‘ Academy on Therapeutic Innovation" (EUPATI), funded by the Innovative Medicines Initiative. The project aims to provide scientifically reliable, objective, comprehensive information to patients on medicines research and development.
http://www.patientsacademy.eu/index.php/en/

The latest issue of the journal The Patient contains an article entitled 'Assessing Stakeholder Opinion on Relations between Cancer Patient Groups and Pharmaceutical Companies in Europe', authored by Novartis Oncology, APCO Insight, and Redmond Consulting. The research for the article was undertaken among 161 respondent healthcare policy-makers and executives from cancer patient groups, drawn from France, Germany, Hungary, Italy, Latvia, the Netherlands, Poland, Portugal, Romania, Spain, Sweden and the UK. The research aimed to understand why public criticism has been directed at relationships between pharmaceutical companies and patient groups. Both sets of parties have responded to such criticism by increasing the level of transparency and openness in their relations in recent years (particularly in publicising pharmaceutical company sources of funding of patient groups). Findings from the study included:

* The condition of the current relationship between pharmaceutical companies and patient groups. Only 11% of the 161 respondents stated that their overall opinion of the relationship between cancer patient groups and pharma was very positive; but 48% said that "it was somewhat positive". The 4% of respondents with a negative view of the relationship said that they considered the relationship unequal, or they wondered whether patient groups were able to marry advocacy and commercial goals. 87% of the respondent patient groups agreed that perhaps the best sign of a mature relationship between pharmaceutical companies and patient groups is when both sides can work together, even when they do not agree on a subject.

* Current controls and safeguards on relations between pharma and cancer patient groups. 55% of the 161 respondents did not believe that current controls and safeguards on the relationship between cancer patient groups and pharma were sufficient. Respondents from Hungary, Latvia and Poland were among the more dissatisfied. 63% of the respondents stated that they felt government control and scrutiny of the relationship was only somewhat effective, or less than somewhat effective.  

* Patient groups supporting pharma R&D. As many as 88% of the respondents agreed with the statement, "Cancer patient groups can help pharmaceutical companies identify unmet need". However, some concerns were aired about cancer patient groups' competence to take on such a role. 

* Patient groups and pharma can co-design patient information. 74% of the respondents were interested in the concept of pharmaceutical companies and patient groups working together to develop non-promotional patient information (notably on strategies to support patient adherence to medicines).

* Patient groups and pharma share interests in improving appropriate access to medicines. 67% of the respondents were interested in the idea of "ensuring patient access to new treatments as quickly as possible".

* The need for greater cross-stakeholder relations. The conclusion that emerged from an open question about how to promote better relations between pharmaceutical companies, cancer patient groups, and health professionals in Europe was that "regular consultation, communication and cooperation" should exist between these three healthcare stakeholders.

The full reference for the article is: Leto di Priolo S. et al., Assessing stakeholder opinion on relations between cancer patient groups and pharmaceutical companies in Europe, Patient, 2012, 5, (2), 127-139.

The US National Coordinator for Health Information Technology has formed a Consumer/Patient Engagement Power Team,
under the auspices of its federal advisory committee, known as the Health IT Standards Committee. The task of the Consumer/Patient
Engagement Power Team is to help strengthen consumer and patient engagement with health IT. At present, the only patient /civic groups on the Team are the Genetic Alliance, the National Partnership for Women & Families, and the Markle Foundation (an NGO that concentrates on IT issues). The remaining members of the Consumer/Patient Engagement Power Team are either individual patients advocates, or healthcare companies.