E-marketing (part 2)

Jean Samuel

STEP-IN Management Ltd.

Continued from “E-marketing (part 1)

Last month I looked at e-marketing using social media and explored some issues for pharma in regard to moderating, participation and monitoring. This month I’ll focus more on the patient perspective.

Why take marketing into the social media arena? To reach HCPs and patients, of course! To alert them to our disease area information websites or patient support programmes and also to find out what they are saying to each other about the disease and the medicines available and to understand the issues important to them. Such valuable market research. But what’s in it for the patient and what rights do they have?

1: Patient power

Product comments, content and company credibility in regard to the HCP arena is often managed via medical Key Opinion Leaders (KOLs). Let’s look at the parallel, sometimes overlapping, patient arena. Informed and empowered in their own health treatments, patients are being increasingly assertive with their HCP regarding treatment and so can, to some measure, be viewed as opinion leaders. In the case of some patients who are very active they can take on the role of KOL to other patients. I’ll use the term coming into general use: Patient Opinion Leader (POL).

You could argue that Patient Groups have long acted as POLs to some degree but in many countries, including the UK, their role has been diluted by the determination to remain at arm’s length from pharma in order to avoid both the reality and perception of being ‘too cosy’ with the industry. This is less true of the patients themselves who want to comment direct to the pharma company hosting disease information sites or promoting a product. One pharma company turned off the ability to comment on one of their YouTube informationals only to turn it back on following a huge influx of disapproval and suspicion from viewers! This underlines the fact that not participating in social media with patients can be just as damaging to the image of the industry as participating improperly. Damned if you do, damned if you don’t: so why not make a virtue of it and do it well?


“You could argue that Patient Groups have long acted as POLs to some degree but, in many countries including the UK, their role has been diluted by the determination to remain at arm’s length from pharma…”

Most Patient Groups have a website but what’s new is that, although patients start out using the formal website, they then use the connection to spawn off less managed sub groups and side conversation using, for example, Twitter feeds, Facebook, links to their own blogs or YouTube footage. Indeed, posting a blog or YouTube diary appears to have become a standard tool in the coping guidance for cancer sufferers or those with a terminal illness and the influence on their readers (usually fellow sufferers or carers) about what is or is not effective can be very powerful.

During a workshop I attended run by Matthew Baker, participants were shown multiple examples of POLs actively seeking to talk with pharma and engage in discussion.1 This is a step beyond the scenarios in my last article of pharma companies making only reactive responses and getting them approved before a reply. Discussion fora have a pace and immediacy to them that does not allow for the timelines associated with standard processes for the formal approval of material.

If pharma are to engage effectively and in the way POLs are asking, it could well be via employees as spokespeople, not KOLs, and s / he will need to respond in real time.

2: Compliantly managing such online events to safeguard the patient

I anticipate that policy and processes to govern such a scenario will grow less from the approval of the reactive responses angle and more from the Advisory Board and Relations with the Public stable.

Considerations are not new,

• Only factual, balanced information can be given by the pharma participant.

• The ‘listen’ versus ’tell’ balance is important to ensure this is not a one way pitch from pharma but also many country based Codes only allow direct to patient communication in response to a direct enquiry and consequently the manner of patients asking questions may need chairing, perhaps by a Patient Group officer or a POL to queue the questions or to amalgamate similar questions from multiple patients into one virtual individual.

• You may need to include a scientific KOL at whom to refer some questions.

• The event must not encourage patients to ask their HCP to prescribe specific products.


“This underlines the fact that not participating in social media with patients can be just as damaging to the image of the industry as participating improperly.”


3: Records retention and a person’s ‘right to be forgotten’

This phrase has grown out of the difficulties that some experienced in erasing their Facebook entry. Just recently the EU confirmed that it will seek to enshrine in law a ‘right to be forgotten’ in an attempt to give users control over their own information. Justice Commissioner Vivian Reding said, “A US-based social network company that has millions of active users in Europe needs to comply with EU rules… The burden of proof should be on data controllers – those who process your personal data. They must prove that they need to keep the data, rather than individuals having to prove that collecting their data is not necessary.”

The practicalities will be a challenge: in its instructions on deleting your Facebook account WikiHow notes ‘how deep your deletion goes is highly questionable — does Facebook still store your information even though you’ve destroyed your way of accessing it? You have no way of knowing’. In addition, to the best of my knowledge, Twitter has no formal retention schedule with all Tweets being kept indefinitely.

In this context, consider what duty, a pharmaceutical company may have in applying retention schedules to Tweets, blog responses, Facebook entries, contributions to discussion fora et al where the company is the host. Think back to my opening premise of why pharma wants to engage in social media and it is clear that personal data will be held by the Company or its agent at some point. This brings into play all the Data Privacy constraints we know well from our CRM (customer relationships management) systems. Importantly for pharma in planning for communications with patients in social media the EU decision will give to national privacy bodies, powers to examine and potentially prosecute companies with services aimed at EU consumers.

CRM data are commonly housed in a specific database or even managed by a conscientious third party who can carry out the requests to delete. Social media records, however, are not so discrete.

Let’s look at why this matters. Retention schedules are not commonly a high profile aspect of planning marketing projects. How many pharma employees can cite their company’s retention schedule for e-mail? In practice it is common fora back-up to be kept for a year – but how easily can you extract the individual mails / messages from a requesting patient? (My experience says, not easily.) How can a company enforce a deletion request regarding one or a set of Tweets when Twitter does not yet have a retention schedule? If , in order to comply with a patient request, your company deletes parts of a conversation on a blog or other forum what markers do you put up to explain the subsequent gaps?


“…does Facebook still store your information even though you’ve destroyed your way of accessing it? You have no way of knowing.”


My recommendations share some of the same elements as last month:

• Talk your plan through with your Compliance team from the start and build in compliance

• Identify, extend or write your SOPs to cover these activities

• Decide how far you will go in terms of resources and effort

• Document your reasoning

• Test you can actually carry out the plan

• Be transparent with the patients and set expectations

• Apply your approach consistently and document the application

• Monitor and review how well the plan works

The next part in this series can be viewed here

About the author:

Jean has worked in the pharmaceutical industry for over 20 years, and is currently an interim manager addressing business compliance and records management with a special interest in e-marketing, Joint Working and the UK Bribery Act.

Former positions include Compliance Director for Schering Plough UK and Head of Clinical Programming and Medical Writing at Pfizer’s UK R&amp,D. In previous roles Jean had responsibility for the development of GCP SOPs, Training and Clinical Trial process improvement, was Inspection Readiness lead during an MHRA inspection and was part of an EFPIA Task Force addressing the secondary use of Electronic Health Records for clinical trials and the privacy and data standards issues this concept raises.



Is it time for pharma to start listening to POLs?