A medical information perspective on social media

For medical information professionals, the Internet presents an interesting dilemma. On the one hand, it is a chaotic environment; a dangerous place for a medical information professional. Yet on the other hand, it is difficult to ignore the testimonies of patients whose lives have literally been transformed through a wealth of health and medicine information, and by participating in online communities.

For many in the medical information and pharmacovigilance field, social media and the Internet have previously been best handled as ‘no-go’ areas for pharma. However, I sense that the tide is turning as many professionals in this field recognise that the Internet has a role to play that goes well beyond marketing.

New perspectives on the role of medical information

This week I took part in the DIA (Drug Information Association) 4th Annual Clinical Forum in Lisbon, Portugal. Also at the conference were around 400 experts in clinical, medical and regulatory affairs from pharmaceutical companies based all around the world, in global and regional roles. I was there to speak about the role of social media, together with UCB Pharma’s Frank Vanderdonck, Knowledge Manager Global Medical Affairs based in Brussels, Belgium in a session put together and led by Sharon Leighton.

The conference was split into nine specialist tracks, and I spent most of my time in the ‘Medical Information and Communications’ track. Spending three days immersed in the medical information environment, tackling issues from legal and copyright to communications technology and customer service, I came away with many new perspectives on the role of medical information colleagues and certainly a fresh appreciation for their work.

In my day to day consultancy work with Creation Healthcare I often work with medical colleagues in pharmaceutical companies. To date, this has primarily been for the purpose of ensuring regulatory compliance during the development of engagement strategies led by marketing and communications professionals. We encourage pharmaceutical marketers and communicators to connect with their medical information colleagues as early as possible in strategy planning. This approach has certainly helped to ensure the efficiency of compliance approval, and medical colleagues have often also been able to help shape the strategy itself.

Through the DIA Forum however, I was able to go beyond my previous experience and see pharma with medical information at its core. I saw a passion for the work that pharmaceutical companies do. “I’m proud to work for pharma. And I’m proud to work for Pfizer!” said Aaron Cockell, Pfizer’s Medical Information Director, EMEA as he opened an excellent session on globalisation and rationalization of medical information.

Challenges and opportunities of the Internet

The challenges and opportunities of the Internet for medical information came up time and time again throughout the Forum, and I took every opportunity I could to discover the views of other delegates and speakers on this topic.
I met some who believe that digital engagement around medicine products should be owned and led by medics, rather than marketers. Some felt that medical information and pharmacovigilance colleagues should take a lead in defining a company’s social media policies, rather than Corporate Communications leading this activity.

I also met medics who were tasked with justifying to their business why they should invest in producing a global medical information website. It was encouraging to hear that such a conversation was taking place.

Medical information or promotion?

Just two weeks ago, I was taking part in DigiPharm Europe Conference 2010, the European conference for digital in pharma. Primarily attended by marketers and communicators, it was encouraging to also meet a small number of medics there who had a special interest in the role of digital engagement. I met a medic with GlaxoSmithKline, for example, whose role specifically focuses on digital engagement.

At DigiPharm, Heather Simmonds, Director of the PMCPA (Prescription Medicines Code of Practice Authority), challenged delegates, not for the first time, to take advantage of the opportunity to at least publish online all the patient information that their companies are allowed to. But she also said that with regard to compliance with the ABPI (the Association of the British Pharmaceutical Industry) Code of Practice, which prohibits the promotion of medicines to patients in the UK, pharmaceutical companies should assume that any communication with patients is promotional unless it can be proved otherwise.

Given that most of the delegates Ms Simmonds was speaking to were marketing and communications professionals, this is an interesting challenge. Surely, by definition, the role of a marketer is to carry out marketing. Why would a marketer communicate anything about a product without intending to promote that product?

The answer to this dilemma is surely in medical information. I believe that medical information professionals not only have the opportunity to provide patients with approved medical information via the Internet; they have a duty to do so.

Responding to customer needs

To illustrate the dangers of the legal minefield in which pharmaceutical companies operate, Hein van den Bos, a legal expert with NautaDutilh based in the Netherlands, provided examples in his presentation at the DIA Forum of recent legal cases against pharma including Pfizer’s USD $2.3bn settlement last year over the marketing of products. Today, it seems few pharma professionals want to risk making decisions that result in the next multi-billion-dollar pharma lawsuit.

Yet the challenge is, what if the next lawsuit is not about what a pharma company did online, but what it failed to do? Consider some known facts about the behaviour of patients online (if you do not consider these to be facts, you only need to carry out a small research initiative to prove them for yourself):

  • Consumers discuss disease, medicine and health online
  • They also search for information about disease, medicine and health online
  • When they do so, they information from a wide range of sources, much of which they will trust, and most of which has not been written by professionals
  • Patients openly share information online about the side-effects of medicines they are taking
  • Patients also openly discuss off-label use of medicines online
  • Healthcare professionals trust information they find online about medicines and disease

In this context, is it not the responsibility of a pharmaceutical company’s medical information professionals to ensure that appropriate, accurate, reliable and compliant information is available to those who seek it?

The task of engaging stakeholders in a relevant and compliant way is not trivial. Patients pay little respect to national boundaries governed by different regulations, but consume information and take part in conversations based anywhere in the world. Medical information professionals seeking to engage patients online must consider practical solutions to handle global regulatory variations. In most cases a global online medical information strategy, informed by local insights and with support from local in-country colleagues, will be necessary.

All of this requires significant collaboration between colleagues across functions and regions. At the start of my presentation at the DIA Forum I made the point that social media is about people first.  It is not primarily about technology, and it is not primarily about marketing.

Bridges to build

I sensed from some who I met at the DIA Forum that they hold their marketing colleagues responsible for an erosion of credibility of pharmaceutical companies, with the implication being that colleagues in marketing might put product sales before patient safety or health outcomes. Whilst this viewpoint is certainly not held by all in medical information, it reminds me of just how many opportunities are missed when marketing and medical information fail to collaborate effectively.

In a nutshell (and I know I’m oversimplifying things here), a research-based pharmaceutical company must discover new products that address a medical need; ensure the efficacy and safety of those products; and then get them to the patients who need them. They must do this in a manner that is legal, regulatory-compliant, and profitable. This requires a breadth of stakeholder engagement led by pharmaceutical professionals with a wide range of skills.

Today, the Internet and social media have a broad role to play in every aspect of pharmaceutical companies’ engagement with health stakeholders; from clinical trials recruitment and support, to engaging healthcare professionals, to developing health literacy and supporting patients.

The power of social media in patient support is not just an idea amongst marketers. Last year I reported on a study by the University of Warwick, which found that in a trial, diabetes patients benefited from peer support gained through being connected with other patients through a virtual community via the Internet.

What next for medical information professionals online?

One thing that I was reminded of at the DIA Forum was that there are few medical information professionals with time to spare. Perhaps this is why for many, serious consideration of the opportunities and challenges of the Internet and social media have simply been pushed aside for more urgent demands of the business.

With this in mind, I would firstly encourage medical information professionals to proactively plan for engaging stakeholders online. Don’t leave it all to your colleagues in Marketing and Communications roles. Consider the role that the Internet could play in helping you achieve your medical information goals.

If reading this has inspired you to take a more proactive role online, here are a few steps that you could start with:

  1. Try using the Internet as a patient. Search for information about a disease, or a medicine, as if you were a patient. Are you happy with what you find? From a medical perspective, what would you want to change about the patient’s experience?
  2. Review your own company’s information online. What medical information do you provide, and is it easy for relevant stakeholders to find it?
  3. Consider organising an informal or formal workshop with colleagues from other business areas. Taking the lead in a collaborative initiative with marketing, communications, IT, and legal, for example, could help you and the whole business to be more effective online.

If you would like help with any of the steps above, or if you would simply like to talk about where to start, Creation Healthcare will support you. We can help by conducting research into Internet user behaviour, facilitating workshops, or supporting strategy development. With a global team in fifteen countries and offices in London and Tokyo, we can help you develop a global strategy informed by local insights.


Daniel Ghinn is Co-Founder and Director of Digital Engagement at Creation Healthcare. You can view the final slides from his DIA Forum presentation on SlideShare.

Daniel Ghinn

Daniel Ghinn is Editor of Healthcare Engagement Strategy and CEO of Creation Healthcare, the online market research consultancy for healthcare. He is a prolific writer and speaker on emerging trends healthcare engagement in the digital age.