“Whatever Anything Is it Ought to Begin by Being Personal”

Sanna Jousi

Research shows that patients are interested in talking about testing. In this Expert Insight, Sanna Jousi discusses how personalized medicine offers the chance for pharma and physicians to reconnect with their patients and put the person back into personalized medicine.

Perhaps, like us at Diaceutics,  you also read the recent Fierce Pharma story (http://www.fiercepharma.com/story/big-pharma-ranks-near-bottom-patient-attitudes/2013-01-18#ixzz2Iu3sg9qe) citing the survey recently published in PatientView Quarterly, which surveyed 500 mostly European, national and regional patient groups, about their opinions of pharma.

Disappointingly, pharma ranked seventh out of eight categories. According to the survey, only 34 per cent gave pharma a good or excellent rating. Generic drugmakers didn’t do much better, with 37 per cent of respondents having good feelings about them, while biotechs were rated favorably by 44 per cent. Patients liked their retail pharmacists the best, at 62 per cent. Then there were medical device companies, 50 per cent; private health care services, 46 per cent; biotechs, 44 per cent and not-for-profit health insurers at 39 per cent. For-profit health insurers fell a full 10 percentage points lower than pharma at 24 per cent.

To those of us in the industry this is not really new news (although always harsh to hear this repeated year after year) and to push back for a minute here, many in the pharma industry have been increasing their dialogue with patients over the past years. We particularly like Pfizer’s cancer patient site http://canceritspersonal.com since it reaches past the physician to engage patients in a dialogue about test and treatment choices. Who says cancer patients won’t understand the complexities of personalized medicine?

At Diaceutics, we track social media sentiment to new therapy launches (since September 2011) and we can confirm (sticking with Pfizer for a minute) that Pfizer’s Xalkori has received ten times greater positive or neutral sentiment than other untargeted treatment launches. In fact, our research confirms the data published by PatientView that consumer sentiment to pharma advertising focused on one-size fits all therapy is overwhelmingly negative. According to the Fierce article, LaMattina—the former president of Pfizer R&D and now senior partner at PureTech Ventures—has gone so far as to suggest that pharma should give up TV advertising as it is hurting more than helping.

It is our contention that personalized medicine is the best place to start a renaissance in pharma-patient and patient-physician relations. It is a truism that personalized medicine has been defined largely to date by those wearing a technology hat. We all bear witness to the fact that the initial translation of genetics and molecular medicine has helped the understanding  of patient biology and that in turn has led to the development of 50+ therapies specifically targeting patient subgroups. Profound technological success is being achieved in the personalized medicine space as each month goes past.

However, it appears that we have all overlooked the effective and subsequent translation of personalized medicine to the very patient themselves. And, as the title of this blog suggests (a quote from the movie You’ve Got Mail), surely personalized medicine ought to begin by being about the patients, their diagnostic and treatment journey and the information they require to be drivers rather than passengers in their own health. It behoves us all to ask, therefore, how can personalized medicine help us to be more patient-centric? We have some tools in the chest here already to help us.

Currently, consumers perceive a quarter of the information on therapy directed at them via online media1, a highly interactive media that lends itself to dialogue rather than broadcast. Furthermore, and from a personalized medicine standpoint, patients want to talk about testing. In fact, despite the lack of major corporate investment in diagnostic communication, our research shows there are three times more internet discussions on diagnostics than on therapy2.

We are kicking off 2013 with a series of insights on this very topic (see Gwen Darien’s Bringing Patient Voices to Personalized Medicine blog) and more importantly on what we can do to translate communication around personalized medicine into a patient-centric dynamic. Putting our own money where our mouth is, we will shortly announce the launch of a whole new division of Diaceutics dedicated to helping our pharma and diagnostic clients unlock the communication promise in personalized medicine.

We would like to applaud Pfizer for the steps it has taken beyond the traditional ‘marketing approach’ to ensure patients have been included in the discussion around their test and treatment choices. We look forward, however, to pushing these boundaries even further, helping our clients to put the person back into the centre of personalized medicine.


(1) Fox, S. The Social Life of Health Information, 2011.
(2) Data from 12 months tracking of Online Media Capture Consumer and Physician Sentiment for 4 months of Sep 1/2012- Nov 20-2012, Meltwater.


View all blogs

Webinars & Podcasts

Podcast: How Diaceutics is repairing the diagnostic testing ecoystem for patients worldwide
Diaceutics CEO, Peter Keeling joins Pat Kenny on Newstalk FM to discuss how analyzing Big Data to implement better diagnostic testing can help patients access better treatment options for cancer and other life-threatening diseases....
Liquid Biopsy in NSCLC
View all

Expert Insights

The CMS National Coverage Decision on NGS
I. Introduction On March 16, 2018, the Centers for Medicare and Medicaid Services (CMS) finalized a National Coverage Determination (NCD) that...
EU IVD Regulation – What does it mean for companion diagnostics and LDTs?
Dave Smart, PhD, Director at Diaceutics, discusses the introduction of the EU IVD Regulation. While it is considered a necessary step, the...
View all expert insights

Competitive Benchmarking Reports

Pharma Precision Medicine Readiness Report 2019
PM Readiness Report 2018 Summary
View all reports


TRK fusion positive cancers: From first clinical data of a TRK inhibitor to future directions
Genetic alterations of neurotrophic tropomyosin or tyrosine receptor kinase (NTRK) 1/2/3 genes generate TRK fusion proteins have been reported in a variety of adult and child cancers from diverse cell/tissue lineages. Larotrectinib, a...
Challenges in the clinical implementation of precision medicine companion diagnostics
The pace of biomarker discovery has increased exponentially over the last few years,ushering in an era of precision medicine (PM) with a growing arsenal of treatments tailored to specific patient populations....
View all publications