Raising awareness of and engagement with precision medicine

No notes for slide

Delighted to be here today to talk to you about how I see our services at Kudos helping further the progress of precision medicine.

I’m going be honest with you upfront and tell you that I’m not the scientist in our team – and until Anne sent me an email explaining that this would be the theme for the vendor challenge, I hadn’t really heard of precision medicine.

But this turned out quite well, because as I began to explore the subject, I realised I am my own case study for the role that Kudos can play in helping to raise awareness, understanding and engagement in relation to precision medicine!

So through that lens, and with thanks to Anne, and my good friend The Internet for a crash course in precision medicine, here are some of the challenges that I see with which Kudos may be able to help
Firstly the need to engage the public with the concept of precision medicine – and make people (like me!) actually aware of it, supportive of it, and eager to participate, whether in studies or in treatment
Related to this is that media reporting needs to be accurate and trustworthy
And of course public awareness and engagement is also key to ensuring continued funding where that funding is influenced by taxpayers (or politicians)
Then you need participants in precision medicine to have a real understanding of the risks and the benefits
Meanwhile practitioners also need new knowledge that may be outside their current expertise, for example, quoting the NIH website: “doctors and other healthcare providers will need to understand more about molecular genetics and biochemistry, and they’ll need to be able to interpret the results of genetic tests and understand how that information is relevant to treatment or prevention approaches, and convey this knowledge to patients”
And then finally for progress to be accelerated, we need more frameworks for collaboration between scientists, practitioners, patients, and pharmaceutical companies.

So that was my homework project putting that slide together – now for the role I see Kudos being able to play in helping tackle those challenges.

Firstly, Kudos provides a platform for authors of publications to explain their work in plain language.
Precision medicine researchers and practitioners are already using Kudos to help more people find and understand their work. So here you can see an example of one of our publication pages, where Alexander Limkakeng from Duke University has added a plain language explanation of what his work is about, why it is important, and a nice personal perspective where he talks about his hopes that his work will further the use of precision medicine techniques in emergency medicine.
This not only helps potential patients and participants to understand precision medicine concepts and benefits, it also provides the media with a plain language explanation – from the horse’s mouth, as it were, so from the researcher or practitioner, and not mediated by anyone less familiar with the work – so it’s a perfect bridge to help correct or prevent misinformation and drive accurate reporting that in turn can help to broaden awareness and engagement – which is going to be a vital part of the PMI goal of recruiting 1 million people to participate in its research study!

Secondly, Kudos provides authors – and their publishers, institutions, funders, sponsors - with tools for managing and measuring efforts to communicate their work.
So on the left here you can see that you can generate a trackable link which you can share in a patient handout or email– and then below that you can actually connect your Kudos and social media accounts and post to Facebook, LinkedIn or Twitter directly from within Kudos.
And on the right, you can see the effectiveness of those efforts. So we have a “basket of metrics” into which we bring citation counts, and the Altmetric score, but then uniquely we also include metrics about the authors’ own sharing activities – so from the left of that basket, it’s how many times did you share your work, how many people clicked on the links you shared, how many people viewed the page you created in Kudos, and how many people clicked through from that to read the full text.
[CLICK] And further, we then map these metrics together – so we map the actions against the results, and they can easily see how 10 minutes’ effort is driving the reach of their work. Where the publisher is working with us and able to do this, they provide daily full text download counts to us so that we can map that data into these graphs and really show which efforts to explain and share are driving readership. And I think that from a metrics perspective, that’s quite important – we see a lot of articles with high levels of readership but as yet no citations, maybe no discussion – and as subjects like precision medicine require us to focus more on increasing public and practitioner engagement with research, the citation count, even the Altmetric score, may be less and less representative of the readership and impact of a work, so being able to put it in a “basket” and see the context of downloads and offline attention is vital.
On that note, down the bottom of the page [CLICK] we break out which channels were used to share, and which of those had the highest response. Now this is really cool, and complements Altmetric really well - because Kudos is not only tracking public channels, like Twitter, we’re also able to track posts on private pages in LinkedIn and Facebook, as well as closed communications like email, or event offline communications like patient handouts. So this is very cool for the author, the physician, to be able to fully understand and measure the engagement with their work. And hence a publication like this one that has an Altmetric score of just 2, based on publicly visible Twitter attention, actually turns out to have had only 8 clicks on the link shared via Twitter, but 33 on the private link shared via LinkedIn. And I had another example recently with a plastic surgeon who’d had over 250 clicks on a link he’d sent out by email to his patients. And that’s a response that without Kudos neither he nor his publisher or institution would have been able to recognize as the source of a big increase in readership of that publication.

How does that all relate back to precision medicine? Well, we’re helping more people to find and understand work, which is helping to inform and engage potential patients and practitioners.

And, the more people that become aware of research in this area and have an entry point to help them understand its benefits, the more likely it is that the long term funding required to make progress is going to be supported and sustained.

But it’s not only about engaging patients. As I said, precision medicine also presents practitioners with a learning gap and a need to understand more about things like molecular genetics and biochemistry.
Here too, Kudos can help. Because it’s not only research about precision medicine itself that is being explained in our platform, and it’s not only the public that derive value from research summaries.
Practitioners and researchers gain value from explanations of work outside their area of expertise – we talk about our summaries as a way of “triaging” the literature – so that it’s easier and quicker to determine at a glance, the potential relevance of a piece of work, and then decide how much more deeply you want to read it.
And these summaries provide a kind of entry point, almost like a navigational aid, to help you then “translate” the more specialist language used even in the abstract, let alone the full text. And actually, having positioned that as a benefit to practitioners, I think too there is a benefit here for patients who can perhaps better understand the treatment or prevention options open to them, and help them have more informed discussions with their physician and indeed start a discussion around precision medicine that perhaps their physician would not otherwise have started.

Another element of our service that adds value in relation to the awareness and understanding of precision medicine, and also in relation to practitioners’ ability to build their knowledge of other research areas.
On the right here you can see that the author has used Kudos to connect the publication to a range of related resources, some of which came into existence after the original paper was published and therefore haven’t been referenced as part of the paper or added as supplementary data. So Kudos is playing a useful role as a hub for other communication formats such as videos, presentations, images, that can help a wider audience begin to understand the concepts within the work.

So by helping practitioners understand science from outside their specialty, we’re helping to drive better application of new techniques, and better outcomes.

And a final thought: our dashboards for institutions, publishers, funders, societies and even corporates can help that wider set of stakeholders support researchers’ and practitioners’ efforts to communicate, amplify them to broader audiences, and derive intelligence about communication effectiveness which can help all parties become more efficient, more effective, and ultimately collaborate together in progressing the visibility, awareness, engagement and effectiveness of precision medicine.