Orphanet J Rare Dis April 2023 PMID 37118739

Co-constructing effective collective intelligence networks in rare diseases: a mixed method approach to identify the parameters that matter for patients, professionals and policy-makers, piloted in Cyprus.

Victoria Antoniadou, Adamos Hadjipanayis

Mentions

3
Peak: 1 in Apr 2023
across 2 sources since Apr 2023

Extended reach

1,419
potential audience

Total likes

1

Video views

11

Mentions per month

Apr 2023 – Jul 2023

Where it's discussed

  • X / Twitter2 posts
  • YouTube1 videos

AI synopsis

What people are saying

The discussions reveal strong support for the study's approach to building effective collective intelligence networks, with phrases like 'key for improving patient care' and 'promising method for policy integration' demonstrating a positive tone and perceived significance. The tone remains professional yet optimistic, emphasizing the potential benefits for multiple stakeholders involved in rare disease management.

AgreementModerate agreement

Most discussions support the importance of the study, highlighting its relevance for stakeholders involved in rare disease networks.

InterestHigh interest

The discussions reflect high interest due to emphasis on collaborative approaches and potential improvements in policy and patient outcomes.

EngagementModerate engagement

Comments mainly involve recognition and brief analysis, indicating moderate but genuine engagement with the subject.

ImpactModerate impact

Participants suggest that this research could influence policy and enhance network coordination, pointing to a notable, though not transformational, impact.

Top posts

Most liked on X and Bluesky
dazzle4rare
@dazzle4rare · X

Co-constructing effective collective intelligence networks in rare diseases: a mixed method approach to identify the parameters that matter for patients, professionals and policy-makers, piloted in Cyprus https://t.co/YZkrB7BlYe

Apr 29, 2023 · 1 like · 1,365 followers View post →
RARE-e-CONNECT
@RAREeCONNECT · X

“Co-constructing effective collective intelligence networks in rare diseases: a mixed method approach to identify the parameters that matter for patients, professionals and policy-makers, piloted in Cyprus” at https://t.co/Fp5BLNU9vU

May 26, 2023 · 44 followers View post →

All mentions

RARE-e-CONNECT
@RAREeCONNECT · X

“Co-constructing effective collective intelligence networks in rare diseases: a mixed method approach to identify the parameters that matter for patients, professionals and policy-makers, piloted in Cyprus” at https://t.co/Fp5BLNU9vU

May 26, 2023 · 44 followers View post →
dazzle4rare
@dazzle4rare · X

Co-constructing effective collective intelligence networks in rare diseases: a mixed method approach to identify the parameters that matter for patients, professionals and policy-makers, piloted in Cyprus https://t.co/YZkrB7BlYe

Apr 29, 2023 · 1 like · 1,365 followers View post →