"PPPI": why academics should engage Patients, the Public *and* Professionals

This is a brief blog about something small and trivial, but also big and important.

Recently on the staircase my friend Carl Heneghan came out with a good line about “Patient and Public Involvement”, or “PPI” as it is known in the trade. “People talk about PPI,” he said: “but we need PPPI… patients, the public, and professionals.”

I think this is absolutely correct. In academia, we often fail to focus on what happens at the coalface. In the Bennett Institute we’ve worked hard to change that. We take conventional academic funder money, and health data, and we produce conventional academic papers (by the shovel-load). But we also turn that data and person-time into live, interactive, data-driven tools like OpenPrescribing.net which people can hold in their hands, and use at the coalface to improve patient care.

As part of this process, we keep our ears and inboxes wide open, so that people can talk back to us. We have an open email address, plastered all over our tools, and this inbox gets circulated to most of the team. We also send out a monthly newsletter, and of course our bespoke prescribing alerts to practices and CCGs. These mail-outs yield a huge amount of feedback, as people have a monthly trigger to send us their thoughts, when they receive data from us that they actually use. We use this feedback to help refine our tools, develop new features, change the wording on our sites, understand how people are using our data, set our priorities, and more.

I wanted to share an email from this morning, not because it’s exceptional, but because it shows the kind of things you get when you open up your inbox and your services to your users. I also think it’s a good illustration of how different our inbox is from the feedback you get on social media, or to the corresponding author email address on an academic paper. The email comes from a CCG pharmacist, it took a few minutes to write, a few to read, and is gold to us. I’ve popped some comments in italics and square brackets along the way.

Silver dressings - this was on our radar but kept on being pushed down on the priorities list - we will definitely look into this. [This is an example of our tool being used to help people spot that a problem, which they already knew about, is ongoing at a concerning level in their organisation.]

Soluble form - definitely an action, especially for our care home pharmacists [This is a good example of someone being alerted to a prescribing issue by our service.]

Vitamin B Co - we have asked the specialists to remove from the protocols for long term supplementation of alcoholic patients - your highlight report will be a helpful tool to show that we are not being unreasonable. [This is a good example of how open public audit can be a good advocacy tool for change.]

Other lipid-modifying drugs - rosuvastatin is coming off patent soon, and therefore there is no need to do additional work. [We noticed the same thing yesterday, and we’re modifying our statins cost measure: we have also been discussing how best to present the data on this retrospectively.]

Co-proxamol - the consensus is that now the only ones on it are those clinging on extremely tightly to it and have been impossible to change - other than it becoming completely unavailable, we may need to wait for natural reduction. [This is useful “high end anecdote” for us, as we’ve been thinking internally about some specific intervention projects around co-proxamol, but did suspect that the last remaining folk on it would be hard to shift.]

Desogestrel - local decision makers were loath to move to generic after previous campaigns to prescribe by brand - this report will lead to a re-consideration. [We’ll have a think on this: the pricing issues around branded generics and generics can be very complex!]

DOACs - we were aware that we have been ahead of DOAC spending in G&W CCG for the last 2 years. I, and a Cardiology consultant led on a full evidence review, and produced the following selection tool for AF: pad.res360.net . We have seen the growth in overall costs of DOACs reduce significantly in the last 6 months but you will not be seeing this in your data as that reduction is because of a rebate for edoxaban. The rebate is managed in accordance to approved governance pad.res360.net . [Ah CCG rebates, now that is a discussion for another day!]

Best regards

Carina

Carina Joanes. MSc, MRPharmS

Lead Commissioning Pharmacist, Supporting Guildford and Waverley CCG, and Surrey Heath CCG

If you’re still reading, I suspect you’re very interested in prescribing data!

Now the question is, what to do with this next. Candidly, I have some concerns about PPI: I think that simple good things are often over-complicated, in the way that can happen in academia. I think that many people who think they do no PPI are actually really good at it, without knowing that the things they do are PPI. But also, structure is important.

We’ve recently set up a PPI group (if you’d like to be involved, please email bennett@phc.ox.ac.uk). We are making our engagement with pharmacists and GPs more structured (despite limited resources) and assembling a small group of interested clinicians across the country. The interesting question, to me, is whether these groups should be considered as different to each other. Both are a mix of technical and non-technical people. One of our patients knows more statistics than we do; most clinical professionals know very little about how to obtain, match, merge, munge, and analyse data for presentation and interpretation online.

Do we have a PPI group? Or a PPPI group? And how are their needs, interests, and roles, any different?