How can industry build relationships with patient groups?

 Analysing the views of 850 international, national and large regional organisations representing the interests of a minimum of 2 million patients. Groups are drawn from the major therapeutic areas, as well as disability and carers groups.

 © A PatientView publication, PatientView Quarterly Spring/Summer 2011

We would like to bring to your attention the following report, “How industry can build relationships with patient groups”, published July 2011. The report provides unique insights from 850 international, national and large regional patient organisations that represent the interests of patients from 11 countries/regions of the world. A full profile of the views of 138 of the groups is also provided.

What the report tells you

The current state of relationships between industry and patient groups: Patient groups detail the size, scale, and nature of their current relationships with industry (including pharma, medical devices, commercial health insurers, commercial health providers, and consumer health companies).

Which companies work with which patient groups (and what the groups think of the companies): Named groups describe the state of their current relationships with their named industry partners. They mention the companies that they think excel in relationships with patient groups.

The impact of guidelines and regulations on industry/patient-group partnerships: The report ranks the various regulations that govern industry/patient-group partnerships for effect upon those partnerships.

Strategic pointers

The report provides strategic pointers—both to industry and to patient groups—as to how these relationships can be improved (from the patient group perspective). Patient groups identify the main barriers to forming partnerships. They point out which sources of information help them frame their views about companiesand, what, in their eyes, characterises a company as reputable or not.

This report lists …

 The top companies named according to number of associations with patient groups and by the excellence of those relationships

The seven major factors about companies that promote a patient group’s willingness to partner or work with them

Seven major factors that affect corporate reputation (from a patient group perspective)

The four main sources of information that patient groups draw upon to build up opinions about companies with which they have had no previous relations

The four main barriers to a successful working relationship identified by patient groups

The two most acceptable forms of corporate funding identified by patient groups 

The single regulation/guideline that has the most impact upon patient groups which form relations with industry

 138 individual patient groups views on the above topics 


Subject areas covered in this survey on industry/patient-group relationsand how they are analysed


Profiles of patient groups: l Specialty/ies l Geographic remit l Minimum number of patients represented l Major sources of funding l Main activities l Main practical services supplied (if any)

Patient group experiences of working with industry: l The types of companies with which patient groups have formed a relationship l The number of companies with which patient groups have a relationship l How the relationship was formed l Current levels of satisfaction with the relationship/s l Whether companies respect the integrity of the patient groups l The duration of the longest relationships (named companies)

Factors that help promote industry/patient-group partnerships—from a patient group perspective: l Key factors that promote a group’s willingness to partner/work with a company l Factors that determine whether a company is reputable enough with which to work l The sources which help groups build up their opinions of companies l The ease with which groups can choose between companies l Barriers to a successful working relationship between companies and patient groups

Subject matter and topics analysed in four ways: 1. Subject matter and topics analysed to provide averages across all data 2. Subject matter and topics analysed to provide data for each of the 11 countries/regions of the world covered in this report 3. Across-country comparisons of key data from the 11 countries/regions of the world 4. The complete responses to the survey from 138 individually-named patient groups—their attitudes to the subject matter and topic

A total of 850 international, national and large regional groups representing the views of patients responded to this survey: l Australasia (Australia and New Zealand): 40 responses, 9 named responses   l Belgium, France and Luxembourg: 22 responses, 4 named responses  l Canada: 40 responses, 3 named responses  l Central and South America (Argentina, Bolivia, Brazil, Chile, Costa Rica, Dominican Republic, Ecuador, El Salvador, Guatemala, Mexico, Peru, Uruguay, and Venezuela) : 40 responses, 20 named responses  l Eastern Europe (Albania, Bulgaria, Croatia, Estonia, Hungary, Kosovo, Latvia, Lithuania, Poland, Romania, Russia, Serbia, Slovakia, Slovenia, and Ukraine): 70 responses, 26 named responses  l Germany:  62 responses, 7 named responses  l Italy 20 responses, 7 named responses  l Netherlands 30 responses, 8 named responses  l  Nordic countries (Denmark, Finland, Iceland, Norway, and Sweden): 30 responses, 14 named responses  l UK: 75 responses, 22  named responses  l  USA: 50 responses, 16  named responses

For more about this report email or telephone 0044-(0)1547-520-965 (contacts are Alexandra Wyke and/or Clive Nead)