How Johnson & Johnson Uses Twitter for Patient Support: A-plus for Effort, D-minus for Sharing

How Johnson & Johnson Uses Twitter for Patient Support: A-plus for Effort, D-minus for Sharing

Every day, I get a synopsis of tweets and newsfeeds from selected pharma companies that I am following (see "News Direct from the Pharma Industry"). Lately, I've been noticing a number of tweets from Johnson and Johnson (@JNJComm) that are direct responses to complaints from consumers about its products. In some cases, complainants have had an extended conversation with JNJ.

However, you won't find these conversations if you look at the @JNJComm Twitter timeline here but you can find them in the PMN Forum archives here. More on this later. Right now I'd like to focus on one of these conversations.

@hiltmon (Hilton Lipschitz) complained about an Acuvue contact lens problem in a tweet posted to @JNJComm. @hiltmon said: "@JNJComm, could you please fwd this to Acuvue team: See the hole in the lens (top right), happened twice now. Thanks. pic.twitter.com/50ML8IrT" The link leads to this photo:

Whether or not this could be classified as a legitimate "adverse event," is a matter for debate, but JNJ responded as if it were: "thanks for alerting use. Please call us at 800-843-2020. It's important that we fully understand what occurred. Thanks! ^DE" Here's a screen shot of the full exchange:

I am not sure what "^DE" means. It appears that JNJComm uses it only at the end of responses to these sorts of complaints. I assume it allows some kind of tracking or followup. [Actually, it indicates the author - in this case Devon Eyer; see UPDATE at the end of this post.] In any case, the end result was one happy (I assume) customer.

I cannot find a legitimate Acuvue Twitter account, although the brand does have a Facebook page. After a quick scan through the Acuvue FB page, I can find no consumer complaints or conversations like the above. It's all good brand "conversations" over there on the Acuvue FB page :-)

The above Twitter conversation might be considered a "brand conversation," which is what brand marketers would like to see (although they would like positive rather than negative conversations about their products). So, JNJ corporate communications people are having these brand support conversations via Twitter, but the brand people -- who presumably manage the FB page -- do not. That's telling in respect to the question I asked in a previous post: "Who's Your Social Media Daddy?"

This conversation is somewhat hidden from most of the nearly 20,000 @JNJComm followers. As I mentioned above, it does not appear in @JNJComm's Twitter timeline because each tweet begins with "@". That makes it a personal conversation in Twitter. Unless you access @JNJComm's Twitter RSS feed as I do, you won't see these tweets. That's unfortunate, IMHO, because it means that the power of social media (e.g., sharing content with followers) is sidestepped. In this case, other consumers may not learn about important safety and other information about Acuvue lenses. Public health would be better served if everyone could learn from the conversation (e.g., the batch number of the faulty lenses).

Of course, it also means that these conversations may not be picked up by the media -- presumably the main audience for @JNJComm and other pharma corporate Twitter accounts -- or by regulators who may like more information about faulty medical products.

UPDATE: ^DE indicates that the @JNJComm posts were written by Devon Eyer, Director, Corporate Communications, Social Media at Johnson & Johnson (see her LinkedIn profile here).

I have included Devon in my list of contenders for the 3rd Annual Pharmaguy Social Media Award. You can learn more about this award here and/or vote for your favorite here.

Boehringer Ingelheim Shows How to Support Patients via Twitter and Beyond

Boehringer Ingelheim Shows How to Support Patients via Twitter and Beyond

One of the uses for pharma Twitter accounts that many ePatient advocates recommend is to directly support patients seeking help regarding their Rx products (see, for example, this Pharma Marketing News (PMN) article: "Use of Twitter for Patient Support" [free pdf]).

Although nearly two-thirds of respondents to a PMN survey thought that using Twitter for patient support activities would be somewhat or very effective, relatively few pharmaceutical companies are doing this on a regular basis. From time to time, however, I do see it happening.

Today, for example, I discovered that Boehringer Ingelheim tweeters in Germany (@boehringer) responded to a tweet from a U.S. caregiver who was seeking help in purchasing Spiriva HandiHaler for her mother. First, this person complained to @BarackObama because of the high cost of the product:

@BarackObama @Messina2012 cam some1 tell me y my moms ESSENTIAL medication is $135.00 a month? That's 2 MUCH 4 some1 on a fixed income :-(

She then followed up with a tweet sent to the attention of @Boehringer:

@Boehringer hellol My mother needs 2 purchase Spiriva HandiHaler & her insurance wont cover it. Are there any coupons or assistance 4 this?

Although @Boehringer is the German-based Twitter account of BI, it did respond. Here's the conversation:

I commend BI for using Twitter to carry on a conversation about a product rather than just providing @Shaundre an 800 number to call. Also, BI -- in Germany -- has taken the extra step in contacting the US office on @Shaundre's behalf. Good job, BI!

Note that BI first asks if @Shaundre spoke to her (or her mother's) doctor about the issue. Preserving the patient-doctor relationship is important when pharma deals directly with patients or caregivers. About 57% of respondents to the survey mentioned above were of the opinion that use of Twitter by pharma for direct-to-patient support activities could be viewed by physicians as coming between them and their patients. Only 30% said these activities would not interfere with the patient-physician relationship.

UPDATE: @boehringerus, BI's U.S. Twitter account, posted this tweet:

@Shaundrie: Thank you for your message. Send your contact info to usnews@boehringer-ingelheim.com and we will contact you directly.

J&J Recalls Grape-flavored Children's Tylenol: Another Missed Opportunity for Social Media

J&J Recalls Grape-flavored Children's Tylenol: Another Missed Opportunity for Social Media

[Great minds think alike! Be sure to read Update at end of this post.]

Here's another case where CHEAP social media -- ie, YouTube -- could have been used by a pharmaceutical company to support patients using its products, but was not.

Johnson & Johnson DID use social media -- Twitter -- to inform followers of its decision to recall of U.S., Infants’ TYLENOL® Oral Suspension, 1 oz. Grape. According to a letter sent to J&J employees' Denice Torres, who’s the President of McNeil Consumer Healthcare, a subsidiary of Johnson & Johnson, said:

"We’re recalling the product at the retail level after receiving a small number of complaints from consumers who reported difficulty using the product’s SimpleMeasure™ dosing system. SimpleMeasure™ includes a dosing syringe, which a parent or caregiver inserts into a protective cover, or “flow restrictor,” at the top of the bottle to measure the proper dose. In some cases, the flow restrictor was pushed into the bottle when inserting the dosing syringe. No adverse events associated with this issue have been reported to date and the risk of a serious adverse medical event is remote."

The letter was posted on the JNJBTW Blog (see here), to which the Twitter post mentioned above linked. J&J will offer people a refund, which is good. But are they abandoning the new dosing system, which is also a good idea? Perhaps it needs a new design, but even so, it should include instructions for use -- and not just written instructions, which many people won't understand. Video would be better.

So, I immediately thought: "Why didn't J&J post a video on YouTube that showed people how to use the dosing syringe?"

Such a video would be almost as easy and cheap for J&J to create as the post to JNJBTW. And it would be more likely to be seen by consumers because YouTube is the second -- maybe now the first -- most used search engine on the Internet! The video could also be embedded within the product web site. [Or even at the end of blog posts such as this one!]

I did a quick search of the product web site and found no information on how to use the SimpleMeasure™ dosing system and no video.

Last week I attended the ePharma Summit, which included a popular presentation titled "I wish I'd Done That! Social Media." Presenters would review competitors' social media campaigns that they liked.

What we really need is a session on "The Social Media We Should Have Done, But Didn't!." I think I will gather my contenders for this session and post them here!

Meanwhile, I hope this gives J&J an idea.

UpDate:
I just learned learned via a Twitter post from @JNJComm at 10:05 AM that there is a YouTube video on How To Use Infants' TYLENOL® SimpleMeasure™: Watch a video about how to use Infants’ TYLENOL Simple Measure > http://www.youtube.com/tylenol

Pharma Social Media Silent About Drug Shortage: Boehringer, Novartis, #FAIL!

Pharma Social Media Silent About Drug Shortage: Boehringer, Novartis, #FAIL!

The pharmaceutical industry is not interested in using social media to inform or support patients using their products. It's only interested in using social media to push out positive news about their companies and products. This is evident by the industry's deafening silence regarding the shortage of cancer drugs such as methotrexate, a drug used to treat children's leukemia among other maladies.

Letters from the American Society of Clinical Oncology, American Cancer Society of Pediatric Hematology/Oncology and Children's Oncology Group, a nationwide network of researchers, were sent to top executives at four U.S. makers of the drug pleading for help. Two of these companies -- Ben Venue Laboratories and Sandoz -- are owned by major non-U.S. Rx pharma companies (Boehringer Ingelhein and Novartis, respectively). The letters state in part:

"As you know, since December we have seen a significant decline in the country’s production of preservative-free Methotrexate (MTX). This drug is critical to the treatment of children with ALL. Approximately 3,500 children and teenagers are diagnosed with ALL each year, with cure rates approaching 90%. Without this drug, patients are at dramatically heightened risk of dying."

As reported in the Chicago Tribune (see here), "the FDA says the main reason for the shortages is manufacturing deficiencies leading to production shutdowns. Shortages also are resulting from companies halting production of drugs with low profit margins, companies consolidating in the generic drug industry and supplies of some ingredients shrinking."

"Established in 1938, Ben Venue Laboratories is the manufacturing arm of Bedford Laboratories, a Boehringer Ingelheim company," says the company's web site. "Bedford Laboratories is one of the largest generic injectable pharmaceutical companies in the United States, offering a broad range of multisource injectables across multiple therapeutic classes."

In November, 2011, Ben Venue Laboratories (Boehringer Ingelheim), for example, shut down its manufacturing and distribution operations at its site in Bedford, Ohio due to significant manufacturing and quality concerns (see here).

Meanwhile, the Twitter accounts of Boehringer and Novartis roll merrily along posting positive tweets about their commitment to cancer patients, while completely ignoring the cancer drug shortage issue. Here are some recent tweets:

• @BoehringerUS: "@WHO estimates that 84 million people will die of cancer between 2005 and 2015 without intervention. #WorldCancerDay"
• @Boehringer: "@martin_dudziak Very true. We are also committed and believe in continued research & clin trials as a major key factor in fighting cancer!"
• @MylanNews: "Mylan Committed to Expanding Access to High Quality, Affordable #HIV/AIDS Treatment. Company Honors #WorldAIDSDay"
• @Novartis: "Novartis continues to research ways to control tumor growth in advanced #breastcancer"

The Rx drug industry is betting its future on developing complex biologics to treat major diseases such as cancer. If the current crisis is any indication about how successful they will be in (1) manufacturing biologics and (2) using social media to inform the public about the products and support patients who depend on these products, then, IMHO, I  doubt they will be successful.

P.S. Meanwhile, Boehringer is developing a Facebook "game," Syrum, which is designed to "educate" the public on how the drug industry develops drugs (see "Pharma & Fun, Not Oxymoronic? Here Comes Gamification!"). I suggest the company's PR people can better spend time and resources using Facebook to support their patients. Currently, BI's Facebook page does not mention the drug shortage problem nor anything else that can be considered helpful to patients who take their drugs!

A Breast Cancer Patient's Painful, Difficult Therapy Choice: Generic vs. Brand?

A Breast Cancer Patient's Painful, Difficult Therapy Choice: Generic vs. Brand?

Since this is national Breast Cancer Month and I am forced to watch NFL linebackers wear pink shoes and mouth guards, I thought it would be appropriate to discuss an issue that just came up in comments to my post about Sanofi-Aventis, Taxotere, and the disgruntled patient (see "Should Sanofi-Aventis Submit an Adverse Event Report Based on 'Disgruntled Patient's' Comments to VOICES FB Page?" and comments).

An anonymous comment to that blog post opened my eyes about issues facing breast cancer patients beyond what I believe many proponents of the "pink" promotional campaign envisioned. Here's the comment:

"It's not just one disgruntled cancer survivor. There are over a hundred of us. Of course, there's no promise that our hair would grow back. GENERALLY grows back. Well for those of us who battled breast cancer but are forced to look at our bald selves in the mirror every day, "generally" isn't good enough. Yes, we're alive. I'm grateful for that. But again, no promise of how long...and with small children, that's another painful reminder of what I've been through. The thing about S-A and Taxotere is this: there's another drug, Taxol, which doesn't cause this permanent alopecia we're dealing with. But we were never told that there was a choice. And what do you think I would have chosen if I'd had a choice? I'm in my early 40s so dealing with permanent alopecial is especially difficult. I have a job in a senior management position. Hard to earn respect when I look like Ben Franklin. We're not mad that Taxotere caused us to experience permanent alopecia...we're mad that we weren't given the choice of the more hair-friendly medication. And why is that? Our oncologists didn't even know. Don't you think they should be made aware of this fact?"

To which I responded:

"While I am not knowledgeable regarding the benefits vs risks of one treatment vs another, shame on your oncologist for not knowing or caring enough to offer you a choice!"

This gave me an idea of how important hair loss can be to breast cancer patients, something that other commenters to my blog post dismissed by saying things like "you should be happy you are alive," etc. Do many pharmaceutical marketers realize this? My friend Rich Meyer thinks not. "Pharma’s priority is still spreadsheets not patients," says Rich (here). "Patients are leaving pharma marketers behind and pharma marketers act like they still matter."

But is Taxol really better than Taxotere with regard to hair loss? To answer this question, I used Google to search on "taxol vs taxotere" and found some interesting online forums and discussions devoted to the issue. Here's a representative post by "billsgirl" that I found on the community.breastcancer.org/ site:

"I have one more A/C tx 2/22, and have done really well with little se to complain about. Now I must decide which Taxane I should go with. I'm leaning toward taxotere because my onc agrees that the bone marrow issues would be easier for my body to tolerate given my positive experience with the A/C, rather than risk neuropathy.

"Also, what about the hair? I've read some who said their hair started growing back after A/C and through T. I've read some scary stories about permanent hair loss. I'd hate that - I mourned my heai more than my breasts (I know that's odd...)

"I'd love your comments. Anything to help me make my decision."

What "help" did "billsgirl" get? There were several somewhat helpful comments and encouraging posts in this forum, but none really answered the question about which drug is best.

On www.medhelp.org -- a Cleveland Clinic "partner" -- I found a similar question by a patient ("Pam") and an "answer" from a physician.

"This forum is just fantastic!! Thank you Cleveland Clinic and Med Help Int'l. for giving people like me a reliable place to ask questions!!!

"My question is: Can you tell me the difference (if any) between Taxol and Taxotere? Does one work better than the other for particular types of breast cancer? My doctor suggested Taxotere, but didn't really give me a good explanation as to why. Your thoughts will be most appreciated."

Doctor's Answer:

"Dear Pam, Thank you for your complimentary comments regarding this Forum.

"Taxol (paclitaxel) and Taxotere (docetaxel) are both from the same family of medications - the taxanes. Both of these show a high level of activity when used as single agents in metastatic breast cancer.

"In reviews of reported studies, when compared with standard therapies Taxotere looks to be the most active single agent in treatment of metastatic breast cancer.

"There are some differences in the treatment schedules of the 2 medications, and there are some differences in the side effects of these 2 medications. I have listed the side effects of both medications.

"Taxotere: decrease of white blood cells, red blood cells and platelets, flu-like symptoms, fluid retention, numbness and/or tingling to fingers and toes, muscle aches or bone pain for a few days after each treatment, mouth sores, hair loss, decreased appetite.

"Uncommon Side Effects: allergic-type reaction, blood pressure and heart rate changes, nausea and vomiting, diarrhea, skin rash usually occurs on hands and feet, nail changes, menstrual cycle may become irregular or stop permanently, menopausal effects including hot flashes and vaginal dryness. Decreased desire for sex during treatment.

"Taxol: decrease of white blood cells, red blood cells and platelets, allergic-like reaction, blood pressure or heart rate changes during the infusion of the medication, mouth ulcers, numbness and/or tingling to fingers and toes, muscle aches or bone pain for a few days after each treatment, mouth sores, hair loss, diarrhea.

"Uncommon Side Effects: nausea and vomiting, nail changes, menstrual cycle may become irregular or stop permanently, menopausal effects including hot flashes and vaginal dryness. Decreased desire for sex during treatment."

Hair loss is mentioned (buried) as one side effect for both drugs.

So, I am still not sure that Anonymous was correct in her assertion that Taxol does not cause hair loss. But it's clear that her oncologist didn't offer her the kind of comparison that was offered to "Pam" online. Could it be that her oncologist had a conflict of interest? I suggested that in my response to Anonymous:

"It's my understanding that oncologists often make a profit 'reselling' these drugs. Obviously, in that case, they have a vested interest in offering patients the drug that gives them the highest profit. I do not know if Taxotere and Taxol differ in this respect."

What I DO know is this: Taxol is a generic medication and Taxotere is a brand medication. And back in 2007, Sanofi-Aventis, which manufactures and markets Taxotere, received a letter from the FDA warning the company not to make superiority claims for Taxotere vs. Taxol (see here).