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

April 2023 Orphanet J Rare Dis

Synopsis of Social media discussions

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.

A
Agreement
 Moderate agreement

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

I
Interest
 High level of interest

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

E
Engagement
 Moderate level of engagement

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

I
Impact
 Moderate level of impact

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

Social Mentions

YouTube

1 Videos

Twitter

2 Posts

Metrics

Video Views

11

Total Likes

1

Extended Reach

1,419

Social Features

3

Timeline: Posts about article

Top Social Media Posts

Posts referencing the article

Building Effective Collective Intelligence Networks for Rare Diseases

Building Effective Collective Intelligence Networks for Rare Diseases

This video explores a mixed method approach to developing effective collective intelligence networks for rare diseases, focusing on key parameters valued by patients, professionals, and policymakers, based on a pilot study in Cyprus.

Medicine RTCL TV

July 20, 2023

11 views

  • RARE-e-CONNECT
    @RAREeCONNECT (Twitter)

    “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
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    May 26, 2023

  • dazzle4rare
    @dazzle4rare (Twitter)

    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
    view full post

    April 29, 2023

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Abstract Synopsis