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UK Health Secretary challenged to tackle access to medicines

- June 4, 2019 in health, News

The Open Knowledge Foundation has written to Westminster Health Secretary Matt Hancock to demand the UK Government plays its role in addressing the global lack of access to medicines. The challenge comes after the UK disassociated itself from an international agreement aimed at reducing the cost of drugs across the world. The resolution at the World Health Assembly was designed to improve the transparency of markets for medicines, vaccines, and other health products. It brought together countries including Brazil, Spain, Russia and India in recognition of the critical role played by health products and services innovation in bringing new treatments and value to patients and health care systems. By sharing information on the price paid for medicines and the results of clinical trials, countries can work together to negotiate fair prices on equal terms with the aim of lowering drug costs. Catherine Stihler, chief executive of the Open Knowledge Foundation, said:
“It is shameful that the UK Government is not willing to stand in solidarity with people most at risk of illness and death because of lack of access to medicines. We live in extraordinary times when new medical and technological advances are capable of saving millions of lives. The key to building equality for all is greater openness and transparency, and this philosophy must also be applied to healthcare. By sharing information on the price paid for medicines and the results of clinical trials, countries can work together to negotiate fair prices on equal terms with the aim of lowering drug costs. Quite simply, openness can save lives across the world.

I urge Matt Hancock to strongly reconsider the UK’s position.”

Evidence Appraisal Data-Thon: A recap of our Open Data Day event

- May 23, 2018 in health, Open Data Day, open data day 2018, Open Research, open research data, Open Science

This blog has been reposted from Medium This blog is part of the event report series on International Open Data Day 2018. On Saturday 3 March, groups from around the world organised over 400 events to celebrate, promote and spread the use of open data. 45 events received additional support through the Open Knowledge International mini-grants scheme, funded by Hivos, SPARC, Mapbox, the Hewlett Foundation and the UK Foreign & Commonwealth Office. The events in this blog were supported through the mini-grants scheme under the Open Research Data theme.

Research can save lives, reduce suffering, and help with scientific understanding. But research can also be unethical, unimportant, invalid, or poorly reported. These issues can harm health, waste scientific and health resources, and reduce trust in science. Differentiating good science from bad, therefore, has big implications. This is happening in the midst of broader discussions about differentiating good information from misinformation. Current controversy regarding political ‘fake news’ has specifically received significant recent attention. Public scientific misinformation and academic scientific misinformation also are published, much of it derived from low quality science.

EvidenceBase is a global, informal, voluntary organization aimed at boosting and starting tools and infrastructure that enhance scientific quality and usability. The critical appraisal of science is one of many mechanisms seeking to evaluate and clarify published science, and evidence appraisal is a key area of EvidenceBase’s work. On March 3rd we held an Open Data Day event to introduce the public to evidence appraisal and to explore and work on an open dataset of appraisals. We reached out to a network in NYC of data scientists, software developers, public health professionals, and clinicians and invited them and their interested friends (including any without health, science, or data training).

 

Our data came from the US’s National Library of Medicine’s PubMed and PubMed Central datasets. PubMed offers indexing, meta-data, and abstracts for biomedical publications and PubMed Central (PMC) offers full-text in pdf and/or xml. PMC has an open-access subset. We explored the portion of this subset that 1) was indexed in PubMed as a “journal comment” and 2) was a comment on a clinical trial. The structure of our 10 hour event was an initial session introducing the general areas of health trials, research issues, and open data and then the remainder of the day consisted of parallel groups tackling three areas: lay exploration and Q&A; dataset processing and word embedding development; and health expertise-guided manual exploration and annotation of comments. We had 2 data scientists, 4 trial experts, 3 physicians, 4 public health practitioners, 4 participants without background but with curiosity, and 1 infant. Our space was donated, and the food was provided from a mix of a grant from Open Data Day provided by SPARC and Open Knowledge International (thank you!) and voluntary participant donations.

On the dataset front, we leveraged the clinical trial and journal comment meta-data in PubMed, and the links between PubMed and PMC, and PMC’s open subset IDs to create a data subset that was solely journal comments on clinical trials that were in PMC’s open subset with xml data. Initial exploration of this subset for quality issues showed us that PubMed metadata tags misindex non-trials as trials and non-comments as comments. Further data curation will be needed. We did use it to create word embeddings and so some brief similarity-based expansion.

 

The domain experts reviewed trials in their area of expertise. Some participants manually extracted text fragments expressing a single appraisal assertion, and attempted to generalize the assertion for future structured knowledge representation work. Overall participants had a fun, productive, and educational time! From the standpoint of EvidenceBase, the event was a success and was interesting. We are mainly virtual and global, so this in person event was new for us, energizing, and helped forge new relationships for the future.

We also learned:

  • We can’t have too much on one person’s plate for logistics and for facilitation. Issues will happen (e.g. food cancellation last minute).
  • Curiosity abounds, and people are thirsty for meaningful and productive social interactions beyond their jobs. They just need to be invited, otherwise this potential group will not be involved.
  • Many people who have data science skills have jobs in industries they don’t love, they have a particular thirst to leverage their skills for good.
  • People without data science expertise but who have domain expertise are keen on exploring the data and offering insight. This can help make sense of it, and can help identify issues (e.g. data quality issues, synonyms, subfield-specific differences).
  • People with neither domain expertise nor data science skills still add vibrancy to these events, though the event organizers need more bandwidth to help orient and facilitate the involvement of these attendees.
  • Public research data sets are messy, and often require further subsetting or transformation to make them usable and high quality.
  • Open data might have license and accessibility barriers. For us, this resulted in a large reduction in journal comments with full-text vs. not, and of those with full-text, a further large reduction in those where the text was open-access and licensed for use in text mining.

We’ll be continuing to develop the data set and annotations started here, and we look forward to the next Open Data Day. We may even host a data event before then!

On the “Open Data Day 2016” wave – Burkina Faso

- March 31, 2016 in health, Open Data Day

This blog post was written by Justin Yarga.  A modest day, but a rich day: Open Data Day in Burkina Faso has helped advance the uptake open data by the open data ecosystem and also helped explore new areas for opening up data. And this time, it is the health sector that was the subject of focus for the open data activists’ community. Let’s go back over a day of discussions and heated debates around open data. The atmosphere: In the amphitheatre of the Institut Supérieur Privé Polytechnique ISPP, a private high education Institute located at one end of the new town of the capital city, the atmosphere is warm on this Saturday morning. Passionate debates of small groups of people gathered in the amphitheatre  in at certain times make you believe that this a day of classes. An atmosphere created by passion, but also laughter. In fact, when we were talking loudly about health and data, especially where to find the data, an inspired participant came up and thought we were looking at agriculture and open data instead (just imagine). Well, the open data and agriculture parenthesis were closed shortly afterwards but the confusion made here is easy to interpret because open data in Burkina Faso is moving simultaneously in many directions, from agriculture to health. We are a country, the first in Francophone Africa, to engage strongly in the process of opening up data. And it was important to interest more people in this fashionable concept that is the open data. Recap. Burkina Faso’s open data community has once again succeeded in attracting new sectors and new people in the process of opening up data. The celebration of the Open Data Day took place around the themes of opening up data in health and energy sectors, achieving good results, particularly in terms of open data and energy.

Who were at the Open Data Day Event?

One of the objectives in participating in the Open Data Day was first to present the existing ecosystem in the area of Open Data to the various stakeholders. And then, to build and strengthen partnerships to advance open data in the entire data ecosystem  in Burkina Faso. Many different stakeholders, active in the field of open data who attended the event were presented, including the “Initiative pour un Burkina Ouvert” (Open Burkina), Open Knowledge Foundation (OKFN) Burkina Faso, BEOG NEERE (For a better future), Geek Developers Network (GDN), Burkina Open Data Initiative (BODI), Open Street Map (OSM) and the Fablab Ouagalab. This is a small group yet representative of the entities that are leading the open data movement in Burkina Faso. We can say that since the first meeting held in April 2014 in Jokkolabs, the small community has grown and contributed to an entire open data ecosystem in Burkina Faso. There was also some participants, students from the medical department of the University of Ouagadougou and health professionals, many of whom discovered the concept of open data for the first time.

PHOTO-DE-COUVERTURE-FACEBOOK

What did we talk about?

The importance of open data and open data opportunities. The day began with an updating participants about open data. Many of the students and health professionals discovered the concept of open data through the introductory presentation given by Idriss Tinto, Ambassador of Open Knowledge Foundation in Burkina Faso. The presentation stressed the importance of open data for democracy with the edifying example of open elections, and opportunities in areas such as education, agriculture and health. After this theoretical phase, the day continued with more hands-on workshops. Open data in the health sector: The first workshop focused on open data and health. The idea behind this workshop was to present the opportunities offered by open data in health, to identify key data to be collected, to consider data reusability and finally to lay the foundations of a strategy for opening data in the sector. The discussions revealed many opportunities with open data in the health sector. In addition, they also revealed something very important: the reluctance of actors in the health sector, including students …. fearing intrusion in their trade. The best example to illustrate that point was the idea to open the list of drugs and indications (in which cases the drug must be used, or not used). The students were afraid it would push patients to self-medicate, and the indications have finally been withdrawn from the list of keys information to open, for the moment. Untitled-1024x576 A citizen-based mapping project: The second workshop of the day focused on a power cuts mapping project in the city of Ouagadougou. This project, supported by Open Burkina, was presented to participants. This ambitious project aims to enable Ouagalais (citizens of Ouagadougou) to adapt to the discomfort of the power cuts by giving them quality information out of data collected from the electricity supply company. For the least, we can say the project has received valuable contributions which will enable it to evolve and take shape very soon. Lessons learned: Anytime and anywhere where there are discussions about opening data there is also some reluctance. And the organizers of the Open Data Day 2016 in Burkina have done well to invite professionals and students in the health sector to discuss Open Data and health. To say that, when you are interested in a given sector, it is important to involve from the outset professionals of that sector to understand their fears, their reluctance and to move forward together through constructive debates. Sometimes, they are the first allies as data producers and even the beneficiaries of open data. Proof? The NENDO project which have been presented at Open Data Day was made possible thanks to the data collected by a professional of the education sector in the municipality. At the end, in the global wave of celebration the Open Data Day 2016 (257 events), on Saturday, March 5, 2016 all the participants acknowledged that Burkina Faso has proudly made it. IMG_20160305_163123-1024x575

On the “Open Data Day 2016” wave – Burkina Faso

- March 31, 2016 in health, Open Data Day

This blog post was written by Justin Yarga.  A modest day, but a rich day: Open Data Day in Burkina Faso has helped advance the uptake open data by the open data ecosystem and also helped explore new areas for opening up data. And this time, it is the health sector that was the subject of focus for the open data activists’ community. Let’s go back over a day of discussions and heated debates around open data. The atmosphere: In the amphitheatre of the Institut Supérieur Privé Polytechnique ISPP, a private high education Institute located at one end of the new town of the capital city, the atmosphere is warm on this Saturday morning. Passionate debates of small groups of people gathered in the amphitheatre  in at certain times make you believe that this a day of classes. An atmosphere created by passion, but also laughter. In fact, when we were talking loudly about health and data, especially where to find the data, an inspired participant came up and thought we were looking at agriculture and open data instead (just imagine). Well, the open data and agriculture parenthesis were closed shortly afterwards but the confusion made here is easy to interpret because open data in Burkina Faso is moving simultaneously in many directions, from agriculture to health. We are a country, the first in Francophone Africa, to engage strongly in the process of opening up data. And it was important to interest more people in this fashionable concept that is the open data. Recap. Burkina Faso’s open data community has once again succeeded in attracting new sectors and new people in the process of opening up data. The celebration of the Open Data Day took place around the themes of opening up data in health and energy sectors, achieving good results, particularly in terms of open data and energy.

Who were at the Open Data Day Event?

One of the objectives in participating in the Open Data Day was first to present the existing ecosystem in the area of Open Data to the various stakeholders. And then, to build and strengthen partnerships to advance open data in the entire data ecosystem  in Burkina Faso. Many different stakeholders, active in the field of open data who attended the event were presented, including the “Initiative pour un Burkina Ouvert” (Open Burkina), Open Knowledge Foundation (OKFN) Burkina Faso, BEOG NEERE (For a better future), Geek Developers Network (GDN), Burkina Open Data Initiative (BODI), Open Street Map (OSM) and the Fablab Ouagalab. This is a small group yet representative of the entities that are leading the open data movement in Burkina Faso. We can say that since the first meeting held in April 2014 in Jokkolabs, the small community has grown and contributed to an entire open data ecosystem in Burkina Faso. There was also some participants, students from the medical department of the University of Ouagadougou and health professionals, many of whom discovered the concept of open data for the first time.

PHOTO-DE-COUVERTURE-FACEBOOK

What did we talk about?

The importance of open data and open data opportunities. The day began with an updating participants about open data. Many of the students and health professionals discovered the concept of open data through the introductory presentation given by Idriss Tinto, Ambassador of Open Knowledge Foundation in Burkina Faso. The presentation stressed the importance of open data for democracy with the edifying example of open elections, and opportunities in areas such as education, agriculture and health. After this theoretical phase, the day continued with more hands-on workshops. Open data in the health sector: The first workshop focused on open data and health. The idea behind this workshop was to present the opportunities offered by open data in health, to identify key data to be collected, to consider data reusability and finally to lay the foundations of a strategy for opening data in the sector. The discussions revealed many opportunities with open data in the health sector. In addition, they also revealed something very important: the reluctance of actors in the health sector, including students …. fearing intrusion in their trade. The best example to illustrate that point was the idea to open the list of drugs and indications (in which cases the drug must be used, or not used). The students were afraid it would push patients to self-medicate, and the indications have finally been withdrawn from the list of keys information to open, for the moment. Untitled-1024x576 A citizen-based mapping project: The second workshop of the day focused on a power cuts mapping project in the city of Ouagadougou. This project, supported by Open Burkina, was presented to participants. This ambitious project aims to enable Ouagalais (citizens of Ouagadougou) to adapt to the discomfort of the power cuts by giving them quality information out of data collected from the electricity supply company. For the least, we can say the project has received valuable contributions which will enable it to evolve and take shape very soon. Lessons learned: Anytime and anywhere where there are discussions about opening data there is also some reluctance. And the organizers of the Open Data Day 2016 in Burkina have done well to invite professionals and students in the health sector to discuss Open Data and health. To say that, when you are interested in a given sector, it is important to involve from the outset professionals of that sector to understand their fears, their reluctance and to move forward together through constructive debates. Sometimes, they are the first allies as data producers and even the beneficiaries of open data. Proof? The NENDO project which have been presented at Open Data Day was made possible thanks to the data collected by a professional of the education sector in the municipality. At the end, in the global wave of celebration the Open Data Day 2016 (257 events), on Saturday, March 5, 2016 all the participants acknowledged that Burkina Faso has proudly made it. IMG_20160305_163123-1024x575

Alcohol and the Human Body (1949)

- December 15, 2015 in alcohol, alcoholism, drugs, health

An educational film by Encyclopaedia Britannica Films showing the effects that alcohol has on the human body and brain as well as the dangers of alcoholism.

Alcohol and the Human Body (1949)

- December 15, 2015 in alcohol, alcoholism, drugs, health

An educational film by Encyclopaedia Britannica Films showing the effects that alcohol has on the human body and brain as well as the dangers of alcoholism.

Getting the Measure of Scotland’s Air Pollution Problem

- June 11, 2015 in environment, Featured, health, Open Government Data

Air Pollution in Scotland Air pollution concentrations are so high they are breaking national safety standards and damaging health in many parts of Scotland. Edinburgh, Glasgow, Dundee, Aberdeen, and even less likely places such as Inverness, have all declared Pollution Zones where toxic air levels regularly break Scottish regulatory standards — standards which were due more »

Getting the Measure of Scotland’s Air Pollution Problem

- June 11, 2015 in environment, Featured, health, Open Government Data

Air Pollution in Scotland Air pollution concentrations are so high they are breaking national safety standards and damaging health in many parts of Scotland. Edinburgh, Glasgow, Dundee, Aberdeen, and even less likely places such as Inverness, all have Pollution Zones where toxic air levels regularly break Scottish regulatory standards — standards which were due to be more »

Getting the Measure of Scotland’s Air Pollution Problem

- June 11, 2015 in environment, Featured, health, Open Government Data

Air Pollution in Scotland Air pollution concentrations are so high they are breaking national safety standards and damaging health in many parts of Scotland. Edinburgh, Glasgow, Dundee, Aberdeen, and even less likely places such as Inverness, all have Pollution Zones where toxic air levels regularly break Scottish regulatory standards — standards which were due to be more »

Getting the Measure of Scotland’s Air Pollution Problem

- June 11, 2015 in environment, Featured, health, Open Government Data

Air Pollution in Scotland Air pollution concentrations are so high they are breaking national safety standards and damaging health in many parts of Scotland. Edinburgh, Glasgow, Dundee, Aberdeen, and even less likely places such as Inverness, all have Pollution Zones where toxic air levels regularly break Scottish regulatory standards — standards which were due to be more »