Pharma and the patient blogger: why and how to engage

Written by Silja on 27 July 2009 in epatients - 29 Comments

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:

slola-35 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?

firefox 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.

slola-35Why do you think pharma has been so slow building these relationship? What are the biggest hurdles and how can they be overcome?

firefoxOne 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.

slola-35What should a relationship between a pharma company and patient bloggers look like?

firefoxThere 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.

slola-35What 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?

firefoxIt 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.

slola-35Which topics could you see pharma partner on with a patient blogger or an online community?

firefoxPharma 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.

slola-35Do you have specific examples of “good partnerships“?

firefoxOne example that comes to mind is the Global Diabetes Handprint project, which was inspired by the Word In Your Hand initiative, born in OneTouch licensed the project from the Diabetes Hands Foundation (the nonprofit that runs 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.

slola-35Who do you think should initiate a partnership project? The blogger or the company or both?

firefoxIt 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.

slola-35Who in the pharma company, do you think, is best suited to initiate, own and maintain the relationship with bloggers? Who should be involved when?

firefox 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.

slola-35 On which criteria or objectives should partnerships be built? How do you know they were successful? How long should they last?

firefoxStraight 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.

slola-35Do you think the partnership differs by disease, blogger or online community?

firefoxIt 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”.

slola-35What specific actions should a company engage in to start the relationship and build the trust? Anything to avoid?

firefoxI 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.

29 Comments on "Pharma and the patient blogger: why and how to engage"

  1. Rebecca Caroe 29 July 2009 at 11 h 21 min ·

    Manny, Keri I think you have summarised most of the key issues that concern pharma marketers.
    One thing you don’t touch on is the fact that patients and medical professionals often find a way to “talk back” to the brand despite the brand’s lack of enthusiasm in initiating engagement.
    The danger is that they do this on forums and in blog posts where they go un-noticed by the brand and so dissent and mis-information can grow. Enabling dialogue on the brand and pharma companies’ own websites may be a good way to draw the discussion into their realm of direct influence.
    Rebecca Caroe,

  2. Neil Calman MD 30 July 2009 at 2 h 58 min ·

    I think it is very hard to concieve of a relationship between pharma and the patient which would make me comfortable. I have watched for years as pharma has plastered doctors with biased, incomplete information in the name of education. How can a company whose main concern is to sell product provide unbiased information to people. They spend billions on marketing to drive demand for the latest and supposedly greatest products that often add little or no therapeutic advantage to our arsenal of drugs but are aimed at moving folks from inexpensive generics to newer brand-name drugs that have yet to come off patent. We need to find a way to continue the great work pharma does in research of truly new drugs yet keep their marketing out of the decision-making of both doctors and patients.

  3. Silja 30 July 2009 at 11 h 46 min ·

    Thank you so very much for adding your perspective to this discussion, Dr. Calman.

    You are absolutely right that we (pharma, physicians, regulators and patients) have to be careful not to reproduce the same mistakes by transposing existing questionable marketing practices and convoluted decision-making into the social media arena. Yet, I think it will be difficult to do as you suggest and keep pharma out of the decision-making process altogether – otherwise, where would the information for sound decision-making come from?

    Social media technology holds a tremendous potential to bring patients right to the center of pharma’s strategies and concerns. Not just the marketing side of things, every step of the pharma value chain will be affected. You mention research for example: I believe patients will have a huge impact on clinical trial designs and participate in them in ways never imagined before.

    You are right the potential of social media also comes with great responsibility – to protect patients from misinformation, to present information in understandable, non-biased terms for patients. Should pharma be trusted with this responsibility alone – absolutely not! And I do not believe they would like to be ;-)

    However, increasingly companies are compelled to react and engage. The incredible drive of social media forces them to. As Rebecca mentions above – misinformed discussions that go unnoticed or get ignored can be just as dangerous for patients as twisted marketing campaigns (and I am not saying one is preferrable over the other ;-) .

    Patient community leaders such as Manny are highly involved with their disease, they play a crucial role in gathering and disseminating information to protect their communities from misinformation. We should thus not try to generalize “the patient“ across the board. Depending on how much patients would like to know about the medical treatment they receives, their degree of involvement with the disease and its community, and their capacity to understand and process the complex information presented, they will feel protected or restricted by the regulation in place…

    I guess, I am arguing for a more flexible approach that would let patients opt in or out of accessing information about treatments. I also think that regulators should rethink the restrictions in place for pharmacos and rather than punish their actions, give clear guidance on and incentivize good behavior, action and information – if we can all agree on what good should look like ;-)

  4. k2 - a.k.a Kelly Kunik 27 March 2010 at 16 h 33 min ·

    The one thing that we as diabetes bloggers really take to heart is the concept of “Full Disclosure,” with our community and readers.

    Whenever we have a relationship w/a pharma company- we are honest about it. Also, as bloggers we make sure that pharma (or any company for that matter) has no editorial control when it comes to the content of our blogs. If we take issue with a product or procedure- we write about it. A great example of this was at the Roche Summit- when a passionate discussion occurred regarding the cost of ALL test strips brands.

    As patients- it’s much easier to respect companies that agree to these terms. And as bloggers, we won’t work with companies who don’t agree to those terms.

    Kelly K

  5. Silja 27 March 2010 at 21 h 37 min ·

    Thank you, so much Kelly, for your sharing your point of view. Transparency on both sides is indeed the number one criteria for the patient blogger/pharma relationship to work and to be sustainable under the critical eye of regulators.

    I believe that patient bloggers or leaders of online communities are a new type of patient educators and thus deserve a their own professional status and set of regulations. Until we get there, transparency is the only and BEST guidance we have.

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