Lately, I witnessed the start of a fascinating dialog between pharma, medical device companies and diabetes bloggers. Roche, for example, just sponsored the first diabetes blog summit bringing together the most influential diabetes bloggers and online community leaders, in order to identify avenues for collaboration. zw4qg6bvya
TuDiabetes, a diabetes online community of over 10,000 members, has also run a number of successful social media awareness campaigns. One of which, the Word In Your Hand project, was licensed to a major glucose meter company by the Diabetes Hands Foundation, the California-based nonprofit that runs TuDiabetes (as well as EsTuDiabetes – Spanish counterpart with over 4,500 members).
Manny Hernandez is the president of The Diabetes Hands Foundation and has used social media actively and effectively to further the cause of diabetes for many years. In his presentation at the CBI conference, Manny, together with Kerri Morrone Sparling, opened the dialog on how pharma companies should partner with the diabetes blogging community.
In light of this insightful presentation, I asked Manny, if he would be willing to answer some more questions about why and how pharma should engage with the patient blogger. Please see our interview notes below:
Why do you think it is important for pharma and patient bloggers to collaborate? What is in it for the patient? What is in it for pharma?
Recently, Amy Tenderich mentioned something that is very true: we depend on each other. People with chronic conditions need their therapies to survive and obviously pharma companies need to sell their drugs to “survive” (as a business).
However, there are elements beyond the health benefits for the patient and financial benefits for the pharma company:
- Health bloggers and online health community leaders represent patients: in a sense they either are the voice of the patient or give patients a place to express themselves. Since patients are pharma’s consumers, this in itself is a very important reason for pharma to collaborate with patient bloggers.
- Through patient bloggers, pharma can remind itself of the people that ultimately benefit from their work: the patients… how they feel, how they react, how they see their treatments and the makers of their treatment. These are very valuable insights to improve the company and its products.
- Through a dialog with pharma, patients can get to see the human side of the industry. I have had the fortune to meet lots of caring individuals that are working in the pharmaceutical industry, because of something that touched them – a relative with a disease, they themselves suffering from a health condition, etc. This experience was driving them to try to help others. These stories get buried beneath the facade of the monolithic and apparently soulless pharma company that can be easily perceived as a drug-making marketing machine.
Connecting with health communities can be more challenging, since online communities, unlike blogs, have multiple voices in them. This leads to much more diverse kind of conversations. Yet, these conversations take place whether pharma wants it or not, whether they want to participate in them or not.
Why do you think pharma has been so slow building these relationship? What are the biggest hurdles and how can they be overcome?
One could be led to say they are slow building these relationships because of regulatory limitations. Yet, the biggest hurdle I have seen is actually fear of not knowing how to handle Adverse Events.
Is this fear founded? I would say a concern is founded, but I don’t think it should lead to fear. And in any case, the possibility of encountering adverse event reports should actually be an encouraging thing, not something to avoid.
As businesses, pharmaceutical companies are probably concerned about the additional cost associated with monitoring new channels and complying with the obligation to act on Adverse Events.Yet, the lost opportunity for pharma is ignoring information that is real and getting posted online which may allow to identify issues early on, before they become more widespread and potentially dangerous. This obviously would benefit patients too!
The FDA can definitely help facilitate the process by establishing social media-specific guidelines. But, even with guidelines in place, there has to be the willingness from pharma to use social media as a channel to develop conversations with patients.
What should a relationship between a pharma company and patient bloggers look like?
There are two important things I can think of :
1) Trust needs to be at the top of the list of things to ensure at all times: there needs to be clarity about who is writing and what potential drivers, motivators or conflicts the person may have.
2) Social media is NOT traditional media: it is conversational. Therefore conversations should take place in an organic fashion.
This will prove to be interesting in light of FDA requirements as far as language goes, but there are some very creative people in pharma – I am sure they can think of ways to comply with regulations and be conversational at the same time.
What would be your advice to a pharma company wishing to start a relationship with the patient bloggers or an online community in diabetes? How should it select and approach bloggers?
It depends. You can think of the most popular bloggers that write about diabetes, which will yield familiar names (David Mendosa, Amy Tenderich, Kerri Morrone and several others). These folks have a broad audience which is probably representative of different kinds of diabetes patients. You can also go for more niche bloggers, who write about specific topics (CGM, insulin pump therapy, etc.): these will be people with a smaller audience, but a more targeted one. It really depends on the company’s approach to media at large, your resources and goals.
Which topics could you see pharma partner on with a patient blogger or an online community?
Pharma could begin by advertising on the blogger’s web site: this is a fairly clear-cut relationship and could help both, the blogger, with additional income, and pharma, with more people watching their ads. In order to make campaigns easier to manage, bloggers could partner and present themselves as a “network” of publishers that can carry campaigns, offering more impressions than a single blog could. This can be accomplished using an open source platform such as OpenX, to serve the ads on the different web sites.
Access to treatment is a big one for me: the best example I can think of is what Procter & Gamble did for Katrina victims through their Loads of Hope initiative. They wheeled washing and drying machines to the disaster area to offer victims free laundry. The laundry trucks were branded with the name of their detergent, but it was a beautiful service that helped people right when they needed it the most.
With the current economic climate and how uninsured patients are seeing their ability to stay healthy severely affected, I am a firm believer that pharma needs to do more to help patients get access to treatment. Again, many creative people in pharma: I would love to see more visible and widespread access to treatment options rolled out. This would go a LONG way to help build the trust that is so fundamental for other types of relationships to be able to grow and develop.
Disease awareness is definitely another “easy” place to work on. However, there must be clear disclaimers about how awareness about a particular disease or condition connects to or benefits the pharmaceutical company, i.e. any sponsored posts or informercial-type content needs to be VERY CLEARLY labeled and separated from non-sponsored content. Again, this goes back to the element of trust.
Branding can be everywhere, but I don’t think we need to see more PUSH. We are already a bit tired of the happy-looking patients on TV ads, talking about the dozen things that can go wrong with their prescription as they jump full of joy through a field of flowers -does this image ring a bell? Examples like the one for Loads of Hope help make powerful emotional connections to brands without the push.
Do you have specific examples of “good partnerships“?
One example that comes to mind is the Global Diabetes Handprint project, which was inspired by the Word In Your Hand initiative, born in TuDiabetes.com. OneTouch licensed the project from the Diabetes Hands Foundation (the nonprofit that runs TuDiabetes.com) and, inspired by Word In Your Hand, extended the initiative through the Global Diabetes Handprint, to collect more submissions of people who decorated their hands with a word that described how they felt about diabetes. For each submission, until June 30, 2009, they donated $5 to a diabetes charity.
An example of a partnership that is a step in the right direction is the branded Twitter page @racewithinsulin where Novo Nordisk promotes its insulin drugs through the tweets posted by Charlie Kimball, a professional race-car driver with diabetes. The reason it is a step in the right direction and not altogether a successful example, in my opinion, is because of the way the tweets that mention the drug name are formatted: they all include prescribing info and the generic name of the drug, which, although mandatory by FDA, is clearly not the way a natural conversation takes place. Another thing that needs improvement with regards to the way this Twitter-based initiative is implemented is the fact that the @racewithinsulin account is following nobody on Twitter as of the time of this interview. This is not a social use of social media, just a one-way push of messages.
Who do you think should initiate a partnership project? The blogger or the company or both?
It is VERY difficult for the blogger to initiate the conversation. It helps to have the company do it. PLUS this shows the company’s commitment to initiate a dialog too.
Who in the pharma company, do you think, is best suited to initiate, own and maintain the relationship with bloggers? Who should be involved when?
Patient Advocacy or Communications sound like the best people to do this. Regulatory will need to get involved at some point but involving them too early could lead to a more limited scope of projects. Marketing would probably get involved, but the language that patient advocacy and communications speaks is a bit more in line with the conversational tone that is needed in social media.
On which criteria or objectives should partnerships be built? How do you know they were successful? How long should they last?
Straight up ROI will definitely be tough to have as a criteria of success in social media. I have heard of Social ROI and similar terms… there is a vocabulary being built as we speak, but many of the metrics used to track social media partnerships in other industries can be reapplied for pharma. Short term agreements are probably best at this point: that way the blogger and the company can both learn and feel more comfortable exploring more, finding new and creative ways to converse.
Do you think the partnership differs by disease, blogger or online community?
It certainly can differ by blogger or online community, since each one possibly has something unique to bring to the table besides the different audiences.As far as difference between diseases, I would assume that “cultures” differ in the diabetes community versus, say, in the cancer community. There also has to be sensitivity towards the needs and language nuances specific to a disease. For example, some people with diabetes object to the term “diabetic” -they find it offensive, whereas they are fine with being referred to as a “person with diabetes”.
What specific actions should a company engage in to start the relationship and build the trust? Anything to avoid?
I have found many pharmaceutical companies use agencies to help with this kind of process. While this is understandable, it can feel a bit removed as an approach: sometimes you never even get to talk to anyone in the company…
If the pharmaceutical company is genuine about its commitment to participate in conversations in social media, it needs to come closer to the front and be a part of the conversation with the blogger early on. There’s room for agencies to support strategy building and implementation, but pharma needs to be there in the calls, in the meetings, in the conversations…
Thank so much you, Manny, for taking the time to answer all of these tough questions about pharma engagement with the patient blogging community. As you know, the topic of how to build bridges between patients and pharma is very dear to my heart. Thank you for adding the patient angle to the discussion.
Let’s get started, let’s build the relationships and start the dialog between pharma and patient bloggers.