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Researchers See Many Benefits from Collaborating with Patients’ Associations

A survey carried out at the French National Institute for Health and Medical Research (INSERM) suggests that the majority of researchers see interacting with patients’ associations in a positive light. The preliminary results were presented today at the French senate as part of a conference gathering INSERM and patients’ associations.

The Cairnet survey, which was instigated by the Group for Discussion with Patients’ Associations
at INSERM, is based on face-to-face interviews and an online
consultation with INSERM researchers that gathered 650 responses. Forty percent of the respondents declared having short-term professional or personal contact with patients’ associations, and another 41% entertaining long-term relationships with them. More than 400 patient associations
were mentioned.

Clinician researchers were almost twice more
likely to have relationships with patients’ associations than non-clinicians
(67% versus 36%). The higher the level of professional responsibility,
the higher the probability that researchers had a long-term relationship
with associations. Eleven percent of researchers under 30 were
involved in such relationships versus 57% for researchers between 50 and

Not quite half of the collaborations involved funding for
the researchers. Those that did often allowed researchers to start
projects and employ doctoral candidates and postdocs. Half of the
researchers believed “that the information provided by the associations
on the day-to-day life and expectations of patients help them in their
research,” a press release
stated. Researchers, in turn, supported the associations by providing
scientific information and helping them select research projects for

Seventy percent of respondents felt that interacting
with patients’ associations didn’t threaten the scientific freedom of
researchers (a percentage that increased to 77% when looking only at
researchers in long-term relationships with associations), against 17%
who did see it as a threat. More than half of respondents said that
interacting with an association was not a time drain, a percentage that
rose to almost two in three for scientists in a long-term relationship with a patients’ association.

thirds of the respondents in relationships with a patients’ association found that direct interactions were important to them for bringing an additional motivation to their
research. Eighty percent felt that their interactions with an
association increased the value of their research in the eyes of the
public or institutions.

“The vast majority of INSERM researchers
today consider patients’ associations not only as representatives but
also as actors contributing to their research activity,” the press release
stated. But “the perception gap between the researchers who have already
been in relation with patients’ associations and those who see such
relationships from the outside illustrates the fact that, in spite of a
recent evolution, certain clichés still remain.”

For advice on how to build a relationship with a patient advocacy group, read “Your Research, Their Hope” and “Science in the Community” on Science Careers.

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