But the imprint of each individual or collective access and use is in itself a rich material.A structured, protected and permanently linked framework can create a background for collecting and processing information that to date remains fragmented, not accessible or static, that is, not updated or correlated.
This fragmentation has been recognized by the European Union with the initiative for “A European Health Data Space”
“There is fragmentation of digital standards and limited digital interoperability between healthcare systems. Recommendations on a European Electronic Health Record Exchange Format exist. Nevertheless, in practice they are not sufficiently applied, which reduces interoperability between systems and creates barriers in the Single Market. Few Member States apply the voluntary eHealth Network guidelines. The resulting market fragmentation hampers the free movement of digital health products and services with duplications and increased costs for healthcare systems, patients, researchers and public institutions. This fragmentation poses a significant challenge for businesses and enterprises and national healthcare systems when integrating innovations in healthcare.Access to, and exchange of, health data for scientific research and innovation, policy-making and regulatory activities remains very limited in Europe (secondary use of health data).”
But the simple collection and provision of quantitative data can become the curtain behind which fragmentation remains invisible in the untouchable.While a productive, smart, systematic utilization of them can, and must, deliver the quality interventions and results we need.
Examples:
RESEARCH OBJEVTIVE
INSTITUTION
FUNDER
LINK
A
X
1
www.domain_example.eu
B
Z
2
NO
- Transparency
A top request is the publication of the results of all research of pharmaceutical actions, at least those carried out with institutional external financial resources. (Mental Health Europe: Shedding light on transparent cooperation in healthcare: The way forward for sunshine and transparency laws across Europe ”report https://www.mhe-sme.org/shedding-light/). For this to happen we must first know what research is underway. Imagine a list that is compiled as a result of collective activation without requiring the response / compliance of the research body or the funder. The absence of registration of the link would indicate the lack of public disclosure, creating the necessary pressure for publication.
Drugs side effects.
The latest announcement of the European Medicine Agency for a widely used antidepressant drug dates back to 2006 and came from a relevant request of the manufacturer to extend its use to ages 8-17 years while the product has been on the market since 1999.
https://www.ema.europa.eu/en/documents/referral/xxxxxx-article-6-12-referral-annex-i-ii-iii_el.pdf
Advanced National Health Systems provide general up-to-date information for product groups without mentioning specific products and research sources.
“https://www.nhs.uk/conditions/antidepressants/side-effects/
Page last reviewed: 16 August 2018
Next review due: 16 August 2021”
Information provided by users or official data from related clinical trials would provide an enriched and timeless picture.
- Campaigns, Joint statements, Joint actions.
The final result of an action depends not only on its initial design and content but also on the scope of the actors taking the initiative, which by definition acts as a limiting factor. The extent of the existing fragmentation becomes particularly apparent when examining the characteristics of the partner groups for a joint action, while the fragmentation results are highlighted by the quantitative data reported in the final scope of the action. As there is never a reference set then every result is considered (self)satisfactory.
In contrast, placing each initiative in a broad dynamic support framework would not only yield much stronger results but would also demonstrate the degree of interest that the energy would encounter, with whatever conclusions can be drawn from it. - Impact evaluation
The basic publicity of policies / funding tools / actions-projects is provided by two main sources:
a) by own means of the implementing bodies.
b) by means of funding bodies.
In both cases the evaluation of the final results is usually treated as a formal response to equally formal ex anteor ex postevaluation requirements. With this approach it is quite easyto confirm / reproduce an opaque cycle of prioritization / assignments that is often far removed from both actual needs and goals.
Public evaluation processes. - Research
Research in general has a power aspect:
(….) In addition, the wealthiest and best-equipped institutions and organizations have a significant advantage in their competitiveness for research funding, and for exercising control over the goals and terms of research partnerships. This results in systematically unfair outcomes between partners in their ability to shape the research agenda, their competitiveness for scientific productivity, impact, capacity building and innovation(…).
https://rfi.cohred.org/what-we-do/
Research always remains a critical factor. The social network cannot take on similar tasks and cannot be turned into a research body. But it can develop strategic partnerships for free access to research evidence(https://www.operas-eu.org/ – https://pkp.sfu.ca/ – https://www.relx.com/) or to be used as research potential.Both parameters can contribute to the creation of metadata – comparative analyzes.
- Misinformation – Disinformation
Much more, however, the social network can function as a means of protecting scientific validity and tackling deliberate misinformation.The presentation of Professor P. Ekekakis (Iowa University) is revealing:
http://eventsproject.eu/images/Exercise_as_antidepressant_Oct24_2018_Athens_Ekkekakis.pdf - OPEN or BIG DATA?
Let us distinguish at this early stage OPEN from BIG DATA as for the second category due to the quality processing parameter included in the term, any approach must be particularly careful as politically and functionally sensitive.
More info:
Institute Human Rights Centre https://www.essex.ac.uk/centres-and-institutes/human-rightsHuman Rights, Big Data and Technology Project https://www.hrbdt.ac.uk/(στο project μετέχει και ο WHO).