Weeknotes

Jeni Tennison

Jeni Tennison

Jeni Tennison

I’ve worked on a couple of things this week…

Our commercial offer

At our last monthly meeting, we had a good discussion about how to approach commercial work (i.e. services provided to other organisations, as opposed to grant work where what we do is self-determined).

It was a really interesting conversation because of the different backgrounds and experiences of the three of us on the team. My experience has left me keen on grant funding and wary about commercial projects distracting us from our mission. Tim, on the other hand, related his concerns about avoiding the lumpy nature of grant funding. And Jonathan talked about how working too closely with the organisations you’re trying to influence can be problematic from a campaigning perspective, and place you in competition with organisations that you want to support or should be allies.

So we decided to set some bounds around the degree to which we’d take on commercial work (a maximum of a third of our collective time), and the kinds of work that we’d take on. We want to limit ourselves to activities that support – rather than deliver – the main business of participatory data governance, namely:

  • early advisory work, where we help organisations to shape their future activities, for example aiding in the design of a call for proposals for a deliberative process
  • expert consultancy, where we provide review and advice during the delivery of projects run by other organisations, usually as a subcontractor to the project lead
  • evaluation, where we analyse and draw lessons from the execution of these projects, to support learning and development across the field

We also discussed how to handle freelancing by the team to provide services that we don’t want to provide as an organisation. In short, we want to encourage it, so long as it doesn’t eat into our time. We know we’re not going to be around forever, so creating longer term opportunities for the members of the team seems like the right thing to do both for them and for the future of the field..

I wrote all this up during the week and should be making it public on the website soon.

Campaigning challenge

The other main piece of work from this week was produced in response to some conversations with Dairmaid McDonald, one of my fellow Shuttleworth Fellows whose initiative, Just Treatment, campaigns for fair access to medicines.

We’ve been talking about the way in which data-driven health applications might lead to the same issues as we see in pharma, with large organisations profiting from people’s ill health and potentially (through pricing or other means) limiting access to applications that could help them.

So much of the conversation about the use of health data focuses on privacy risks that it can neglect the privatisation risks. We’ve been talking about how to shift the narrative to include these wider impacts and ensure fair terms and conditions are put into place, particularly around access to health data by companies that ensures access to products created from that data.

Our first step was just to list a bunch of things that we could do together. I’ll summarise them here in case they’re useful to other people too. I’ll note that many of these have already been done by other organisations, in particular Understanding Patient Data.

  • Research
    • Problem analysis – defining the problem we’re aiming to solve in our own words, with a particular focus on the people we think are impacted by it
    • Ecosystem mapping – understanding the different actors and stakeholders within the health data ecosystem, how they relate to and influence each other, and how much power they hold over the way the ecosystem works and how their incentives are structured
    • Story analysis – analysing the ways in which stories about health data are told, to understand the current predominant narratives and the solutions that these stories lead people towards
  • Design
    • Strategy development – analysing different routes to impact through different stakeholders, and selecting different strategies and tactics to create change
    • Framing development – trying out different narratives, phrases, and lines of argument, to see which ones land best with different audiences and help them to appreciate the role of data in the wider ecosystem and its implications
  • Execution
    • Asset generation – creating assets such as videos and graphics that help to illustrate and explain the way that health data works.
    • Story response – putting together resources and create connections that enable us to respond quickly to stories that are about health data
    • Story generation - creating stories that highlight the issues that we want to highlight and are framed in ways that illustrate our narrative

Other things to look at

I’ve blogged about British data protection. This was originally intended as an op-ed off the back of Michele Donelan’s speech at the Conservative Party Conference, and I’ve had to amend a bit since, given we have a whole new government now! But I thought it was still worth making public.

The UK Parliament’s Science and Technology Committee have opened an inquiry into the governance of AI, which is worth having a look at and responding to.