Aurora has been advising clients on market access a lot this year and then all of a sudden there seems to be a flurry of market access-esque articles in the trade press. We at Aurora pride ourselves in being innovators, and I refer you to www.wehatesocialmedia.com for our latest offering, so we don’t really want to jump on bandwagons. That said, we also like to have our say and engage in ‘hot topics’ so here are our thoughts on all things market access.

The healthcare market in the UK is changing. We now find ourselves in an age of austerity with healthcare budget cuts becoming a daily reality. In addition, following the publication of Andrew Lansley’s NHS White Paper, the balance of commissioning power is due to shift from the PCO level to the hands of GPs themselves.

What does this mean for new drugs entering the UK healthcare market? How are pharmaceutical companies adapting to the environmental changes and what preparations are they making to create a positive healthcare environment to support their new drug?

Traditionally, this remit has fallen to pharmaceutical company ‘Market Access’ teams. Just how big these teams are varies widely across companies. Some teams mostly deal with NICE and SMC submissions, and devising patient access schemes, while others are involved much earlier in the drug lifecycle and engage directly with payers. However, all discussions are based around the financial value proposition of the drug in question. The messages relayed are very distinct from the marketing team’s data centric conversations with their customers – the prescribers.

But in the proposed new healthcare system the distinction between payers and prescribers is much more blurred. Gone are the blockbuster days where Professor X could say, ‘Just look at the data! New drug A is clearly better than existing drug B.’ What’s more, patients are being given more choice and are actively being encouraged to be more empowered about their health decisions. Only by having a clear understanding of the patient journey, and how their drug positively benefits that journey and improves patient outcomes, will companies be able to effectively communicate the true value of their product to the decision makers who influence uptake. Does this mean a more holistic approach to market access is required in this new healthcare environment? And as an extension of any pharmaceutical marketing team, what role do healthcare communications agencies play in assisting and supporting this new market access model?

In fact, through the NHS Choices website, you can now view such appraisal for any GP practice in any PCT in England, provided someone has felt the need to leave a comment (which is probably for negative reasons more often than not). If you would like to read what people in your local community have to say about the GP practice you frequent, visit the site at the link above and you can join the conversation. Or you could start by joining the conversation right here. What do you think of giving people the opportunity to leave online comments about their GP practices?

Thirteen new children from seven countries with the rapid ageing disease Progeria have been found as a direct result of the campaign, bringing the total known cases in the world to 67.

The campaign was run globally by GLOBALHealthPR with the sole aim of identifying children with Progeria through media relations activities.

As of October 2009, only 54 children living in 30 countries worldwide across the globe had been identified with Progeria. The disease affects less than .01% of the world’s population. However, experts estimated that another 150 children with Progeria were alive elsewhere in the world, but had not yet been located or identified.

“At the launch of the campaign, we thought that finding even one child would make the campaign a success,” said Audrey Gordon, Executive Director and President of The Progeria Research Foundation (PRF). “Each additional child we identify with Progeria allows us to provide him or her with unique and essential medical services and care, and significantly furthers medical research to develop treatments and a cure.”

“These results have exceeded our greatest expectations,” Ms. Gordon said. PRF is the only non-profit organisation solely dedicated to finding treatments and the cure for Progeria.

Since all children with Progeria eventually die from the same heart disease that affects millions of older people, finding a cure for Progeria may provide clues to preventing or treating heart disease, as well as other conditions associated with the natural aging process.

‘Find the other 150’

The ‘Find the other 150’ campaign was conducted in 10 countries. GLOBALHealthPR conducted media relations activities in consumer media and directly with medical professionals using locally adapted and culturally relevant materials as well as using online tools such as the campaign website.

The awareness generated more than 20 inquiries to PRF about potential children with Progeria in six months. From these inquiries, 13 new children with Progeria were identified from seven countries.

“These results are tremendous and make me very proud of my GLOBALHealth colleagues,” commented Neil Crump, joint Managing Director of GLOBALHealthPR’s UK partner Aurora. “If disease awareness efforts can make such a big difference in the world of Progeria, just imagine the enormous impact that well-funded education and outreach campaigns could have on more common diseases, and the implications for enhancing research, treatment and prevention,” he added.

The author of a report which features the personal details of 100 million Facebook users says he released the information to highlight the privacy issues associated with social networking. This has received widespread media pick-up because it is captivating, and a classic attention-grabbing scare story. But it is not the massive scandal it might appear to be. People who don’t want to share their personal lives online don’t. And people who are happy to be open about their information online aren’t going to stop using social networks just because of this report. Facebook scare stories are nothing new (as we said in a post not long ago). So is this a complete red herring? Should we care in the field of healthcare communications?

It’s important to keep an eye on trends like this for sure. The number of people who have signed up to Foursquare, in which your online friends can track your actual geographic location, is high enough to suggest people don’t care too much about privacy.

There is nothing to suggest people are going to stop using social media because some long forgotten (but reassuring) concept of privacy will all of a sudden return. Fears are often quickly calmed when the ‘reasons for’ come in, and the bottom line is that if people see the benefits of these systems and genuinely want to use them they will be willing to take a little bit of risk. It’s likely we’ll see more educated users of social networks, but if people are willing to share with trusted parties where they are on a map, they are going to be willing to share sensitive healthcare information if approached in a professional, trustworthy manner and there are clear benefits to be gained.

The reason the Crump brain has let this post run along in the background is that I totally agree but also totally disagree with it! I left a comment on the Virgo blog for Ed but thought I would expand on my comment and explain myself a bit further…

Having a presence in the online world leaves a legacy and it means taking personal responsibility for your ‘brand’. I agree that the FB scare story was low to no impact, but I am pleased that FB, back in May this year, made setting personal privacy easier. Back then I wrote a brief blog about this topic and encouraged people to look in a rational way at how they set their privacy. On the FB front this is not simply a dichotomous ON or OFF decision, it is a sliding scale across a range of different parameters.

While the ultimate aim of being social should be transparency and openness, I don’t believe that the default setting for social media platforms should be fully open for all to see. The default should be informed consent that encourages transparency and openness, having been given clear information to help an individual consider the implications. I am not advocating the dreadful 30 pages of terms and conditions mumbo jumbo that legal departments (of iTunes et al) are so fond of, rather a few pointers to explain privacy (and the short and long terms implications), that encourages people to actively select the level of privacy they want for themselves.

There are massive benefits to engaging openly in social media, my life is genuinely enriched by it, I learn loads, meet interesting people, and have made some amazing new friends as a result.

On a personal front I have virtually everything about my life set to ‘access all areas’. Across all the social media platforms that I play in you can learn whatever you want about me, you can quickly find out the name of my cat, see the pictures of my civil partnership last August, check out my new Nike ID trainers, find out what car I drive, see what restaurants I have eaten in, see the crazy face I pull when I am our socialising and may have had a pint or two (or more!).  You can explore my political views, see what makes be furrow browed or makes me LOL. I blog professionally and personally, I love being open, honest and transparent. I have however made a conscious choice to have my life open for all to see.

Turning to health, there are clearly huge benefits when it comes to people sharing widely and openly about sensitive healthcare information. Sharing knowledge and the creation of communities around broad, as well as specific health issues, which provide support and advice, bring massive benefits, both life improving and life-extending ones. Again this should be encouraged and supported, but with the default being informed openness.

Communities like Patients Like Me are doing this well.  People share almost EVERYTHING about their health status but they choose whether they want anyone to see it (a casual visitor to the site) or only people in the community (members) to see it (and a range of other parameters in between).

Privacy is not a black and white issue, it just isn’t that simple, and we should not play into the polarised debate on privacy, but spread the word that privacy is about a range of choice.

This is important because the way people perceive social media privacy can make social media excluding.  Let me explain. A lot of my friends are not on Facebook, although one or two are just plain technophobes, many just don’t want to have people digging around in their private lives. So people need to know that privacy isn’t an ON or OFF thing – that they can participate, they can engage but in the way they want to. They have a choice, they have control.

What I am not advocating here is giving any of us, either on a personal or organisational level, an escape argument for no engagement, social media silence and worst of all half hearted attempts at social media where the engagement functionality is turned off (arrggghhhh!). The benefits of openness and engaging online are too important.

I do however believe that there is a responsibility of people that create social media platforms, especially ones that become dominant, to help people understand the information legacy that they are creating.

Let’s embrace the health conversation and mobilise people to participate, doing this in a way that encourages openness by educating people about their online legacy and making informed privacy decisions. Informed openness is the way forward.

So what do you think? Would the broadening of the privacy discussion encourage more people to engage?

With massive health service funding cuts pledged by the Lib-Cons, the pharmaceutical industry is going to have to spend its own money more wisely than ever and work efficiently and effectively with its biggest ‘customer’, the NHS. This means extra challenges for healthcare communicators and an improved understanding of modern communication trends. With NICE firming up their door policy of late, all key stakeholders need to conduct conversations early on to establish the rationale for new healthcare products.

The rise of digital, and in particular, social media (SM) channels of communication has coincided with the global recession and the smart-minded healthcare communicator will be taking steps now to make the most of this impactful way of engaging. SM in pharmaceutical communications has its own set of pitfalls but Aurora has published a series of videos on our YouTube channel, We Hate Social Media, which will help guide you through this apparently misty landscape and let the love shine through. Also in August’s PM is a contribution from Aurora’s other MD and co-founder, Neil Crump, on the risks and opportunities associated with pharmaceutical industry engagement in social media.

The age of austerity brings challenges that initially may seem treacherous for the pharmaceutical industry, but engaging with these challenges head on and understanding the current situation is sure to smooth the road. As Claire points out, the post-war ethic of austerity was coupled with a national feeling of hope and opportunity for the future. The 21st century equivalent is very different but the same fundamental positivity can be embraced. This period can teach the pharmaceutical industry good lessons about economy, efficiency and sustainability that will be beneficial in years to come.

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To celebrate the 1st birthday of the #hcsmeu community and inspired by this excellent video (spotted by @pharmaguy and shared on the #hcsmeu Facebook page)…

…here is an idea…

Compile a video of the #hcsmeu community members saying “hcsmeu” from the birthday gatherings on Friday 6th August (if you cannot attend a birthday party then please record a message from your home or office).

Please send videos to me and I will get this edited together and put up on YouTube as quickly as possible. I will bring my Flip camera for the London gathering in Vauxhall.

If you would like to take part here is a mini briefing:

• Go to www.dropbox.com
• Click to download Dropbox
• Follow the instructions that pop up to install the program
• Once it is installed, open the ‘My Dropbox’ folder which will be located in your ‘My Documents’ folder
• Open and read the getting started guide to teach you how to use Dropbox to share files

I am looking forward to seeing the London revellers and many others in ‘person’ on the video.

Take care, Neil (@aurorahealthpr ^NC)

We put ourselves through this ‘ordeal’ because we believe that it is time for pharma companies to embrace social media with rigour and make a valuable contribution to the global health discussion that is going on all around us.

We understand why a person in pharma might hate social media but we want to help people find the love.

See all six ‘We Hate Social Media’ videos on our YouTube channel - there is also a compilation video (known as a mashup) to give you a flavour of the discussion.

So a year has passed and has much changed? Are there any gold medals to award? Well the honest answers are “not a lot” and “maybe a few”…

The Dose of Digital Pharma and Healthcare Social Media Wiki, run by Jonathan Richman, has not expanded exponentially, although some good (mainly US) examples of good practice were awarded ‘Dosies’.  However, even in the US, where (from this side of the Atlantic) social media appeared to have started to run wild and free, like a majestic herd of wildebeests, the FDAs (slow) assessment of the use of digital seems to have at least penned up the herd a little.

There are however encouraging signs of growth, even here in the UK, where early shiny green shoots are starting to appear, and like the shoots that appear in Spring, they make you feel hopeful, confident and relieved that the Summer is on the way.

In just the last few weeks there has been much chat about two UK programmes in particular:

• Pfizer’s Man Mot (Dominic Tyer at InPharma did a great write up)
• Janssen-Cilag’s Living with ADHD YouTube channel (John Mack wrote about this on his blog)

This is properly pioneering (and correct) use of the web to create dialogue with people that want to chat – marvellous.  Having worked for, and with, pharma companies for a long time in healthcare communications this is a MASSIVE sea change.  Guess what - this change didn’t happen by magic, or through of a company saying “let’s give social media a try because it is what everyone wants us to do”.

Oh no my friends, there are individuals in these organisations who have busted a gut to make them happen.  My guess is there were months of meetings and a LOT of heated debate with regulatory affairs, legal and medical departments – but they did it.  I have run these kind of meetings for clients. They are hard work, and there is block, after hurdle, after open man hole cover to avoid and overcome. This can lead to the faint hearted getting disenfranchised and giving up. Hey, if these folk are so passionate about social media they can easily go and have amazing careers in other sectors where they could quickly excel!  But these pharma social media athletes are committed, they are passionate and they want to succeed in the pharma sector.

There are people in pharma (quite a lot in fact) that hate social media, the Aurora team explore this on our YouTube channel.

I don’t want this post to come across as sycophantic or gushy on this topic.  Neither am I some sole maverick attempting to defend the pharma industry – I’m just healthcare comms guy Neil from London, who loves his cat and a pint of cold fizzy larger.

So what do I want to say?  Well I passionately believe that discussion and constructive criticism of pharma use of social media is paramount – this activity MUST be encouraged, MUST be championed, MUST be nurtured. The same mistakes made over and over again will be good for no-one involved. We all need to learn from each other.

However, concurrently to this approach I want to assert, as politely as possible, that as pharma companies venture into this uncharted territory, that our early champions MUST be encouraged, MUST be championed, MUST be nurtured.

Otherwise we will lose them and we will be back to square one, and that would be a terrible shame.