Cochrane Croatia’s collaboration with partner patient/consumer organisations: use of Cochrane evidence, expectations, and opinions on data sharing

Zakarija-Grkovic I1, Buljan I1, Drandic D2, Colombo C3, Banzi R4, Krleza-Jeric K5
1Cochrane Croatia, University of Split School of Medicine, 2Roda-Parents in Action, 3Laboratory of Research on Consumer Involvement, IRCCS-Istituto di Ricerche Farmacologiche Mario Negri, 4Center for Regulatory Policies, IRCCS-Istituto di Ricerche Farmacologiche Mario Negri, 5Cochrane Croatia, University of Split School of Medicine; IMPACT Observatory, MedILS (Mediterranean Institute for Life Sciences)

Background:

Since 2013, Cochrane Croatia (CC) has been establishing partnerships with organisations in Croatia and Bosnia/Herzegovina committed to evidence-based healthcare. Today, CC has 19 formal partner organisations, of which nine are patient/consumer organisations. No previous assessment of the satisfaction and expectations of partner organisations has been conducted; neither has the use of Cochrane evidence by members of partner organisations been evaluated. In addition, the issue of sharing individual patient data from clinical studies has not been previously explored in Croatia.

Objectives:

Among members of CC’s partner organisations:

1) to assess the use of Cochrane evidence;

2) to explore partner satisfaction;

3) to determine needs and expectations;

4) to evaluate involvement in clinical trials and opinions on data sharing;

5) toprovide an example of best practices and lessons learnt for the larger Cochrane community.

Methods:

We compiled a 37-item questionnaire that covered the following topics: patient naming preference; frequency of internet searching for health information; use of Cochrane evidence; awareness of Cochrane Consumer Network; participation in and satisfaction with CC’s activities; expectations of CC; participation in clinical trials; awareness of data sharing; attitudes towards data sharing. The survey questions were designed to enable comparisons with findings from ongoing surveys on the topic of data sharing. Representatives of patient/consumer organisations were invited to comment on the draft survey. Once Ethics approval is received, the survey will be sent via Survey Monkey to all partner organisations.

Results:

To be presented at the Cochrane Colloquium in Edinburgh.

Conclusions:

This survey will contribute to a better understanding of the knowledge, practices, and expectations of Croatian patient/consumer organizations, as well as help inform a strategic plan for future collaboration. This information will be useful to all Cochrane groups looking to improve knowledge translation and relationships with partner organisations. It will also contribute to informing the IMPACT Observatory (a tool to assess, inform, and contribute to ongoing changes of research due to sharing and reuse of research data), dedicated to assessing the culture of different stakeholders towards data sharing.

Healthcare consumer involvement:

DD, a healthcare consumer, is a co-author. The survey was commented on by the Cochrane Consumer Executive.