I didn’t think so.

Do you get those nagging calls about PPI? It’s usually early evening. Sometimes it is a recorded voice message. Sometimes a text. Very occasionally it is a real person from the unreal environment of a call centre. Unfortunately they are all contacting me about that other PPI – yes, Payment Protection Insurance. Those financiers and bankers really stole our thunder didn’t they when they called it PPI? (By the way you should go and see ‘The Big Short’ if you haven’t already).

Sorry, I digress.

If only, if only, we had a legion of sales people ringing innocent victims around the country to tell them about public involvement in research; to offer them the latest products which will make their day brighter and easier. At bargain prices and in any shape, size or colour that fitted them best.

Particularly to sell the message to researchers – cash-strapped, time short, expected to do more with less, downtrodden. Hang on, they sound just like patients and the public. Perhaps they are, secretly, when they are at home and no one is looking.

Fact is that we have lots of volunteers who do this round-the-clock. But we just don’t have phones for them and sometimes the products they need. But this week, two ‘how to’ guides have emerged that I think will be great additions to our stock.

The first – and I truly love this one – is a new guidebook to patient and public by Parkinson’s UK: ‘Patients and Public Involvement: A Resource for Researchers.’ It’s beautifully presented and a pleasure to read with lots of great advice. Parkinson’s UK is proof positive that you can go from being an organisation that is average in public involvement to being an exemplar. It just takes will and dedicated people with smart ideas.

I once rather flippantly referred to EUPATI as sounding like a dish you order from a take-away. But here’s one take-away from them you won’t regret (is it me or am I sounding more and more like a judge off Strictly Come Dancing). The European Patients Academy have launched their long awaited toolbox on medicines development that looks at every aspect of this activity including public involvement. A quick look suggests it is comprehensive and will be a rich and vibrant source of information. I particularly like the access to lots of current articles. Good job EUPATI.

It’s one of the hardest things they will have to do.  It is physically and mentally draining.  For many it will feel a lonely place.  The atmosphere will be unlike anything they have ever experienced before. Some will feel as if they are in a state of suspended animation. Others will feel as if they have leapt off a cliff into the unknown. One thing is for sure: the world will never look the same again. And there is work to do, more often than not in the shadows.

Yes, today, tomorrow and for ever after, patients will be stepping into the unknown by contributing to research for the first time. As a volunteer on a clinical trial. By joining an advisory group to help researchers design their experiment.  By reading research proposals…

Each will be spacewalking in their own way.

This week we learnt a bit more from NIHR CRN about how cancer patients feel about taking part in research. They want to benefit from new treatments. But they would also like more information about what it is they are testing. They also think they should get to hear about the results.

We learnt from healthtalkonline that for researchers public involvement can also feel like stepping into the unknown.  Those who have done it, encourage their colleagues to learn from those who have, that they should not feel alone.  Many talk about the motivation gained from working with those who will ultimately benefit from their work.

We also heard how industry and patients – for such a long time on different planets – may be beginning to occupy the same orbit if not come together.  A EUPATI paper published in BMJ Open showed that lack of knowledge of one another is a barrier to closer collaboration and partnership.  For many companies, public involvement does not land well with them because it feels too nebulous a concept.

study of public involvement in primary care published in ‘Research Engagement and Involvement’ highlighted how the sustainability of public involvement was predicated on ‘organizational commitment and leadership, adequate resourcing and dedicated support infrastructure.’  Ground controllers to note.

Finally and fittingly, it seemed only right to mention this absorbing piece from Forbes magazine about David Bowie’s connections with science and medicine.

Well done Tim – you will have earned your rest this weekend.

To patients and the public everywhere who are stepping outside the capsule next week – and perhaps for the first time – good luck!






Yes, that is a long headline is it not? 

PharmaTimes and others cover a paper in PloS Medicine authored by a number of medicines regulators including the European Medicines Agency (EMA), calling for openness in raw trial data. The three pronged approach they suggest looks like a good basis for discussion.  It would be interesting to know whether patient groups or charities have made any response to their suggestions.

Meanwhile, the European Patients’ Academy on Therapuetic Innovation (EUPATI) has issued a call for examples of educational materials on medicines development.  EUPATI is a new initiative launched earlier this year to improve patient-facing materials on medicines R&D.

Thought people might be interested to know that the European Patients’ Academy on Therapeutic Innovation (otherwise known as EUPATI) is holding its launch meeting on 27th March 2012 in Copenhagen.  Details and programme here.  I wrote about the EUPATI initiative on my blog in February if you want to find out more.

Also, it would be remiss of me not to draw attention to the fact that Patientfocus have responded to ‘that blog’ about ‘that article’ in The Guardian looking at gathering patient experience and insight.  And a good response it is too.  Thanks Helen.  See her comments on the blog here.

The EU economy might be splintering apart.  But, meanwhile, a number of patient/public/private organisations are ‘euro-zoning’ in on the task of providing better information for patients on medicines development.

The new initiative – which was launched on 1st February – is called the European Patients Academy on Therapeutic Innovation  or EUPATI for short.

Thank goodness they did indeed shorten it to a more palatable – indeed culinary sounding – anagram.  Is it me or is EU-speak and what EU organisations put out completely  indicepherable all of the time?  And isn’t there an irony in that, given the objective?

I’ve not quite disentangled all the bits and bodies behind EUPATI, but the consortium is being led by the European Patients Forum.   EUPATI has its first public conference coming up later this year and has a range of products in its sights including an internet library of resources.

I was sent the news release by a number of good colleagues, and I am taking heart from this that UK patients and patient groups are getting involved.