April 2024 Overview Associates Meeting

CONTROL GROUP

YOUR HEALTH | YOUR DATA | YOUR CHOICE

OVERVIEW OF THE ASSOCIATES’ STEERING MEETINGS
26 April 2024

The aim of the Associates’ Steering Meetings is to enable subscribing participants – those who enable the study to run – to hear directly from the directors of the Control Group about what they have achieved in the last six months and where they intend to take the project over the coming six months.

The Associates’ Steering Meetings also offers those subscribing participants – “Associates”— the opportunity to feedback upon the ideas presented to them and offer suggestions as to how the Control Group can overcome some of its scientific and operational challenges.

The meeting began with a summary of what has been achieved in the last six months. This includes:

This ‘charts’ function was previewed to the Associates at the meeting and they were given an exclusive link to test out this new function within their accounts.

The charts’ function depicts the raw, anonymized data in the Control Group database in the form of maps, graphs, and charts. This data is presented in real-time meaning that if anything changes in the data, viewers can see the maps and charts change before their eyes. The function is being trialled on our basic demographic and geography data. In time, we hope this function will be applied to all the data in the database!

Dez then addressed some of the ongoing issues the Control Group are facing, including:

  • Overcoming issues with email notifications
  • Overcoming payment provider issues
  • Ensuring data quality

Emails

Ensuring all participants receive our emails is an on-going ‘whack-a-mole’ issue. As soon as we find a solution, and people begin to receive more, we are then blocked again by their provider.

As well as technical interventions, we have begun duplicating every mass email and newsletter that we send out on the ‘News’ page of our website. If you feel like you have not heard from us in a while, check this page on our website.

We have introduced a ‘banner’ function inside your Control Group account which will enable you to see urgent messages when you login to your profile – such as notification that your subscription (if you have one with us) is expiring.

At the Steering Meetings we also suggested introducing a ‘notification bell’ inside your Control Group account which would flash every time we sent out an email relevant to you and participants felt positive about this step.

In the meantime, we are very active on all major (and some minor) social media sites and this is the easiest way to keep up-to-date with any Control Group news and events – search @ControlGroupHQ on your favourite social media sites or join one of our Telegram channels.

Payment providers

The Control Group took the difficult decision last month to stop the auto-renewal of Annual Subscriptions due to the number of disputes being raised with our payment provider Stripe. These disputes would have resulted in a financial penalty of tens of thousands of pounds and the card provider Visa would have prevented any transactions by the Control Group.

Associates helped the directors brainstorm other methods of receiving donations, including Crypto and standing orders. Each of the avenues suggested would have to be explore in more depth to understand their accessibility, vulnerability, and tax implications worldwide.

Data Confidence

The legitimacy and strength of the Control Group study is dependent upon our having good quality data. We need to know there are real lives attached the data we are seeing, and not just bots putting in random information. We are exploring avenues of authentication, such as captcha or mobile verification code. We also looking at applying ‘tiers of trust’ to participants’ profiles – a bronze, silver, and gold standard, perhaps – enabling the researchers who examine our anonymized data to filter for quality and reliability.

Associates were enthusiastic about these propositions, citing the need for the project to be as respectable and credible as possible with the quality of the data carrying much more favour than the quantity of participants.

There were some disputes about how to best authenticate the identity behind the account with photographic and geometric verification (understandably) being the least favourable option. The general consensus was that whilst none of us like the invasive nature of verification measures, text verification would be the least intrusive and worth doing to prevent mass spam accounts and ensure there is a real person behind the health record. It was also noted that another verification method may be necessary for those who do not own a phone or find it difficult to use interactive technologies.

Of course, the implementation of any of these measures would be voluntary, and hence the need for ‘tiers of trust within the data.

A data quality specific steering and research group is being formed to develop this idea.

Diny then laid out the intended direction of the Control Group over the coming six months, which is to focus on developing the study and recruiting more people – other participants and researchers – into the study, and spreading awareness.

Developing the study

The Control Group are commissioning subject-specific steering and research groups to improve data-capture, data presentation, and the user-experience. Steering groups will be led by the directors of the Control Group with members of the medical and scientific community who specialize in the subject matter, and a party of volunteer Associate members who either have knowledge about or passion for the subject matter.

So far, we are commissioning steering groups for:

  • Paediatrics — how to better capture information about conception, pregnancy, birth and infancy, as well as attracting more young people into the survey.
  • Data Confidence — building confidence in our data via account verification and adding ‘tiers of trust’ to the data.
  • User-experience — making it easier and quicker for participants to record high quality data with us.

You can recommend a podcast for us to appear on here.

Recruiting researchers

The Control Group wants scientists, researchers and doctors to know about the Control Group and get involved in developing and forwarding our project.

No positive change will come towards transparent data and the respect of bodily autonomy in the mainstream establishment if we do not challenge their control from the inside.

If you are have a background in research and health and are interested in getting involved in the Control Group’s work on a casual or more involved basis, please contact us: support@controlgroup.coop

We hope you are as excited for the road ahead as we are!

If you are not yet an Associate Member of the Control Group but are interested in supporting our research and coming to the next Associate’s Steering Meeting in October 2024, visit our website to learn more: https://controlgroup.coop/support/become-an-associate.html

We look forward to sharing our progress with you over the coming months so keep an eye on your email inbox, our social media channels and the News page on our website!

Control Group Team