Amongst the many fringe events at BIO 2014, the One Nucleus-Stockholm Uppsala Life Sciences’ Breakfast discussion on the opening Tuesday again stood out.

With invites going out also through our BayBio, BIOCOM and MassBIO contacts, a diverse audience gathered to hear Mike Ward, Global Director of Content for Informa, chair an expert panel who gave their perspectives on value based healthcare, and, in particular, how properly maintained Patient Registries can provide the vital metrics needed to create outcomes-based healthcare systems. They included Mark Stevenson, Thermo Fisher Scientific; Stefan Larsson, Boston Consulting Group; Tobias Sjöblom, Uppsala University and Martin Gibson, NorthWest EHealth, UK.

Stefan Larsson who is considered one of the leading exponents of value-based healthcare set the scene by pointing out the dramatic improvements that have been seen where such an approach is taken. He cited several examples where looking at outcomes through patient registries rather than cost per item brings dramatic improvements – most noticeably the Martini Klinik in Hamburg which has revolutionised prostate cancer treatment in this way. Rates of severe erectile dysfunction one year after a prostatectomy are now less than half the German average, and instances of urinary incontinence are one-seventh the average.

The initial feeling amongst the panel was that an increasing number of companies were now seeing the idea of value based healthcare as an opportunity rather than a threat, possibly even leading in the long term to larger markets. Clearly the demand for medicines that actually work in the majority of patients, rather than just a few is going to grow from both authorities and the public. Martin Gibson pointed out that NICE is already very outcomes focused. Coming to the theme of the breakfast, Tobias Sjoblom explained that experience in Sweden which boasts possibly the highest number of registries worldwide, lead him and others to believe that patient-registry-based trials form the ideal complement to regular clinical trials and indeed should even be considered as essential. The key determinant though of their success he strongly maintains is transparency – showing which medicines/treatments work best brings creates a win-win situation – for patients, payers, healthcare systems and ultimately companies.

The discussion then moved on to barriers, which according to the panel centre around various aspects of data management – i.e. quality of data gathered, standardisation and patient security. Again both Tobias and Martin pointed out that much was being achieved in these areas – in Sweden, strong public support means that Tobias and his colleagues have been able to forge ahead and create real time patient registries accessible by patients, industry and professionals, whilst in the UK, although having to move more carefully, Martin’s team have been successful in creating functioning electronic registries at a regional level.

Pressed by Mike though the consensus was that whilst a system change is necessary, no single player can or will take the lead. Rather it was the panel’s opinion that progress would be example led as more and more win-win situations come to light. The engagement of health economists was also felt to be essential. One other interesting factor that cropped up several times was the effect of peer pressure. It seems that just the publication of league tables based on outcomes encourages if not shames poor performers into action. Stefan hopes that the creation of international standards through the non-profit organization ICHOM, (the International Consortium for Health Outcomes Measurement), will also accelerate this effect. Overall, if successful, he believes that we will finally move from a system bent on controlling physicians to one that enables them.

Strong and heady stuff first thing in the morning, but the audience was clearly engaged and Mike consummately wrapped up with a series of clear take home messages. Namely that because using properly constructed and maintained patient registries brings so many opportunities, changes will come. However, examples of best practice need to continue to be highlighted and transparency maintained – and finally that if the process is communicated properly patients can also be strong drivers of change.

Talk then shifted to possible themes for next year in Philadelphia, with big data, digital health and antibiotic resistance all possibilities for the agenda.


About onenucleus

The One Nucleus blog is written by individuals and is not necessarily a reflection of the views held by One Nucleus.
This entry was posted in November 2011. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s