Less than three weeks after a Facebook page was set up by one patient angry with KV Pharmaceuticals’ pricing of its newly approved drug Makena, the US Food and Drug Administration (FDA) has today announced that KV should not have exclusive rights to produce similar products. This apparent about-turn resulted in the pharmaceutical company’s share price plummeting, placing it at the top of the NYSE Biggest Percentage Decliners list with a more than 20% drop in share value.

Prior to today’s FDA announcement, KV Pharmaceuticals had been granted seven years of exclusivity under the Orphan Drug Act and received what the FDA describes as ‘considerable assistance from the federal government in connection with the development of Makena’.

After the product was approved on March 10, KV Pharmaceuticals sent letters to pharmacists, many of whom had previously been able to compound their own versions of the drug, warning them that they faced potential FDA enforcement and should stop compounding the drug themselves.

However, the FDA’s announcement today makes it clear that this is not correct but rather that “the FDA does not intend to take enforcement action against pharmacies that compound [the active ingredient] based on a valid prescription.”

On 17 March, one week after the FDA’s approval of Makena, Creation Healthcare reported the launch of a Facebook page by pregnant mothers in the USA angry about KV Pharmaceuticals’ pricing of its newly FDA-approved synthetic progesterone product, and raised once again the urgent need for pharmaceutical companies to plan ahead for social media engagement.

At the time, the Facebook page had already reached over 550 fans. By today, 30 March, that number was over 1,400. It is not merely the number of fans that is notable, however, but their level of engagement. The page’s wall is rich with comments and links to external resources. And the Page’s ‘Photos’ area has become a powerful visual gallery of children and newborn babies.

The Facebook page’s ‘photos’ area has become a powerful gallery of newborn babies.

I asked Christine O’Connell, the Facebook page’s founder, today about the role of Facebook in the campaign to rally support. She told me that it provided the best platform to reach many people quickly and share ideas:

“I started this page quite simply because I was outraged. I knew if other people knew about this unconscionable price increase, they’d be outraged too. Facebook gave me the best platform to reach a lot of people in a short time.

“My hope was that we’d stir up enough public anger to somehow force KV Pharm to right this wrong. I wasn’t sure how the page could achieve that, but I believed that if we put our heads together, we’d figure something out.

“And that’s exactly what happened. Not only did affected moms and dads get involved, but doctors, news reporters and medical organizations joined the conversation. We shared information and ideas on everything from boycotts to contacting our Congressional representatives.

“I really think this was the power of social media to inform, educate and rally people at its best!  I’m so pleased that common sense has prevailed.”

The response from members of the page’s ‘community’ of supporters is perhaps best summed up by this comment from one of them:

“I just want to say THANK YOU for starting this page. I joined when there were under 100 of us, and now look! Not only is it a voice for women and their future babies, but we have seen well respected doctors engage in this conversation a well as health organizations. It has proven to be a powerful tool.”

So whilst the FDA continues to ponder the pharmaceutical industry’s role in social media, perhaps this story will remind those working in pharma communications that failure to engage with patients online today is simply not a viable option.

October is international “Breast Cancer Awareness Month”; or “Octobre Rose” (“Pink October”) in France. This is an opportunity for patient groups, charities or states to raise awareness about breast cancer and reiterate the importance of screening.

In France, more than 52,000 new breast cancer cases are estimated in 2010, making it the most common cancer amongst women. Thus, the “Octobre Rose” campaign aims to overcome the reluctance of women to take part in breast cancer screening.

Among the many initiatives and digital strategies that are emerging throughout Europe is the digital engagement campaign “La Chaine Rose” from pharmaceutical company Roche in France.

Social media to engage a community against breast cancer

Pharmaceutical marketers and communicators know that social media and new digital communication strategies can be an important tool to achieve their goals. Yet digital campaigns that connect patients and pharmaceutical companies around a cause using these new channels of communication are still quite rare in France.

This example of communication using social networks engages both patients and their relatives.

Campaign overview

Roche have launched the “La Chaine Rose” campaign for the fourth consecutive year to participate, encourage and financially support a charity working against cancer. Between the 1st of October and 30th of November, visitors are invited to express themselves by writing a story about women and breast cancer, on the theme of struggle, hope and support. For every story shared on the campaign website, Roche will pay 10 € to the French association “Tout le monde chante contre le cancer” (“Everybody sing against cancer”) to the tune of 15,000 €.

Through this campaign, Roche skilfully uses social networks such as Facebook, Twitter, YouTube and the campaign website to engage patients and release them from their fears to express themselves. I spoke with Fanny Gaudry, Press Relations Manager at Roche and she pointed out that patients are present on the Internet and are looking for communities where they can get some information or share their experience:

“There is a need for expression and this event is precisely an opportunity to allow people to express themselves around Breast Cancer Awareness Month”

The website www.lachainerose.com is the heart of Roche’s campaign. The platform is a “wall” where all those committed against cancer can freely come and tell a story that has touched them, or their own story, and then invite one of their friends to continue this chain.

And to mobilize more people and create a “chain” that is as long as possible, Roche uses a Facebook page followed by nearly 1,500 people. The moderator of this page actively encourages Facebook users to continue to post stories on the website.

The Twitter account @lachainerose is also a way of sharing stories of women living with breast cancer with Twitter users, and of disseminating the messages of hope, struggle and support more widely.

Ms Gaudry told me that using social networks for this campaign is found to be the best way to encourage people affected by breast cancer to share their stories. For this campaign, she says that the development and use of these digital channels have not been particularly complicated because Roche are not talking about products. Additionally, Roche has recently set up a new team in France in charge of e-marketing and e-communication, reflecting the company’s increasing development of digital engagement.

However, she says:

“all the stories are moderated, they are read before being posted to ensure that there is no treatment name, doctor name… and that they obey the rules outlined on the website.”

A digital territory against breast cancer

Last year, Roche’s “La Chain Rose” recorded more than 5,000 testimonies; today its Facebook page is “Liked” by nearly 1,500 people and its Twitter account followed by more than 130 followers.

The information shared by patients and their supporters contributes both to financing the French association “Tout le monde chante contre le cancer “, and to enriching the knowledge and understanding of the disease.

Last year, patients were allowed to post short messages of support, and this year longer stories about real experiences can be shared.  Ms Gaudry says that Roche now has the opportunity to do more with the stories that have been shared:

“The campaign was designed to better understand the experience of patients”.

Roche’s role is not to directly raise awareness about the need to get screened, but rather to raise awareness of breast cancer by facilitating discussions on the website and beyond. Those involved in the campaign will respond not only through social media but also through their families, friends and colleagues.

Thus, “La Chaine Rose” is a temporary community acting together for a common cause and whose the link is the pharmaceutical company behind the campaign. Roche brings to patients and all those who are concerned with this disease a “digital territory” where everyone can participate and share.

Through this initiative, Roche shows that despite the regulatory restrictions in terms of communication, it is possible to create a link with patients and their families by supporting them online.

Two-way conversation does not yet exist, but the links are in place.

If you would like to develop a strategy for engaging patients or any other stakeholders in a relevant way about health matters, Creation Healthcare can help. Contact us to find out how.

]]> http://creationhealthcare.com/articles/roche-raises-awareness-of-breast-cancer-in-france-through-social-media/feed/ 0 http://creationhealthcare.com/articles/roi-in-online-healthcare-initiatives/ http://creationhealthcare.com/articles/roi-in-online-healthcare-initiatives/#comments Thu, 29 Apr 2010 16:00:14 +0000 Paul Grant http://creationinteractive.com/?p=9234afbcb1bb3c2b4b850e22a3d564bd9c9c3156db

Perhaps you noticed some of the confusion about return on investment (ROI) for social media and online initiatives in the past year. Certainly there has been a lot of conversation online and offline about what this actually is.

In fact ROI is not at all complicated, nor does it need commentators to re-define and interpret what it may mean; it is already a series of mathematically precise business metrics, perhaps best simplified as something like:

ROI = (GAIN – COST) / COST

Consequently, the range of descriptive spin which has been introduced in recent times to try and communicate the actual value of social media to the business is bewildering. Here are just a few that have been mentioned in the context of the healthcare industry;

• Return on investment – Just focus on the investment part at this stage, as it is a learning process where we don’t know what to expect.
• Return on ignorance – What if we don’t, what if we miss out?
• Return on influence – We just need to have a persuasive presence online.
• Return on interest – Think of it as an area of interest.

Some have even gone as far as changing the acronym altogether;

• Return on connections – It’s not about the money, just how many friends we have
• Return on hassle…

There are probably more. However, in the world of business ROI hasn’t changed at all.

Tangible ROI in health care and business

The ‘I’ in ROI means ‘investment’, which is usually in the form of capital (or resources which require capital). It figures therefore that the output returned (the ‘R’) also needs to be in these same units. A financial value is required.

Indeed one Pharmaceutical Brand Director made this point very strongly at an ‘e’-Pharma conference in the US earlier this year, which paraphrased goes like this:

“…you marketing types think that ROI is something that you can determine from your web analytics, but in the real-world of pharmaceuticals any measurement about website visitors is three levels down from true business ROI. Has there been an increase in prescriptions? Has there been an increase in sales? Let’s call it for what it is; we are a product manufacturing business, and we have to sell products.”

So the idea of ‘visitors’, or ‘hits’, or ‘time on site’ or conversion is not really helping to answer the big business principles – unless it is tied to a financial indicator. Even so, many well-meaning companies and agencies continue to derive new metrics to try and define online or social ROI. Some have even successfully integrated these metrics within their CRM systems. However these measurement indicators may truthfully only show the ‘potential for return’, but do not actually translate to the ‘actual revenue return’ that will be generated.

Nonetheless, there are many organisations for which ROI cannot be determined in terms of sales and revenue. Non-profit patient advocacy organisations are one example. Pharmaceutical patient safety campaigns are another. That said, there will usually be business objectives which are themselves tangible and measurable. In the case of a non-profit patient advocacy organisation, it may be the ability to secure funding.

Likewise in regulated areas such as medical devices, or prescription only medicine, or surgical supplies. Activities online by these companies often have no direct measurable correlation between the expenditure and the financial bottom line of the business.

Indeed for health care in general, determining ROI from channels like Social Media may seem even more intangible than for other industry sectors.

Case Study: TuDiabetes and The Diabetes Hands Foundation

In a recent interview with Manny Hernandez of the online patient group TuDiabetes, we discussed this at length. TuDiabetes, EsTuDiabetes, and the Diabetes Hands Foundation have received critical acclaim from industry observers, and from other patient advocacy groups who are keen to imitate the great engagement achieved online and offline.

After discussing some of the notable campaigns, which won TuDiabetes an award for Best Patient Community, we started to go deeper into the organisational objectives, and how well the initiatives served in meeting the big picture needs.

Manny explained:

“…in the past we were turned down on funding and sponsorship because we didn’t have quantitative data.”

As Chairman of the Board for the Diabetes Hands Foundation, as well as the founder, Manny naturally expects results from the good work they are doing. Results which do not include revenue, or even membership growth; but tangible benefit to people whose lives are touched by diabetes. In their own words they have a vision to

“…actively promote positive and proactive actions to stay healthy while living with diabetes.”

Changing behaviour is not the most ‘tangible’ of business objectives, and certainly does not fall into the typical paradigm of ROI. Yet this is also one of the most common objectives mentioned by the health care and pharmaceutical clients that Creation Healthcare provides strategy and research for.

When the BigBlueTest ran, the goal was to educate and to increase participation. In hindsight, it was recognised that collecting solid data is critical for building a case for the next phase funding, but that collecting mountains of data alone is useless without the right questions and the right measurement at the point of setting the strategy. Learning from the past, Manny knows that the 2010 version of the online/offline event will be even better.

Another popular campaign – Making Sense of Diabetes – was funded by Boehringer Ingelheim, a company that did not at that time offer any products specifically for Diabetes sufferers, although had a pipeline of oral antidiabetic products in clinical development. The ROI for Boehringer Ingelheim through such an exercise is massively intangible. Clearly there is brand association in a new therapy area, there is goodwill, there is support of public awareness – but no clear link to product sales and true ROI. Success can be construed through non-financial indicators, those with which marketing and communications teams are already very familiar. Fortunately, we live in a age where every online action is measurable, unlike the days of the traditional printed piece and television.

This is an important point in setting expectation. The expectation for a CSR initiative is very different than for a product launch. So at this level we have to be content with ‘potential value’ as a measure of success, or tie the success to well-targeted brand exposure associated with behavioural indicators such as ‘Opportunities to see’, or ‘Visits’ and so on.

As it happens, Manny did feel somewhat disappointed with the actual ‘views’ of the YouTube final compiled video, with approximately 4,360 as this article is written. However in terms of influence, this video is literally changing the thinking of patient groups all over Europe, and certainly giving pharmaceutical companies something to think about too. Although this is anecdotal, and once again less possible to measure quantitatively.

So how is the Diabetes Hands Foundation going to obtain their form of non-financial ROI in the future? Well, an exciting development proposed by the Boston Children’s Hospital is potentially going to close the loop and provide the kind of quantifiable evidence of changed patient outcomes that they need.

tuAnalyze is an application in Beta testing, which will allow members to enter, track and optionally share their haemoglobin A1c data. The potential exists to map this data by geography, or to find trends which lead to healthier behaviour for members. Importantly, members are able to opt into the level of personal health record sharing that they are comfortable with, leading to different but equally valuable research outcomes.

Manny explained his respect for research oriented institutions like PatientsLikeMe;

“I have always been a long-time admirer of the Heywood brothers because they have been really leading the way in this space. They gained access to data which respects patient choices and preferences.”

He understands the need to commercialize such operations and for industry to accept this new form of patient information, and says that for the Diabetes Hands Foundation it is actually not an option;

“It was important to us from the beginning that our network was run as a non-profit.”

So in the near future, the Diabetes Hands Foundation will have their own meaningful measurement which enables them to tangibly determine how effective their online networking efforts and awareness campaigns are in changing the perception and management of the diabetes condition. You can look forward to Part II of my conversation with Manny in the coming weeks.

Assigning value to intangible organisational objectives

In any case, every measurable action can be assigned a ‘value’; If it is someone signing up to a newsletter, how much money would have needed to be spent to find a contact, phone them, and ‘opt-in’ them to achieve the same outcome. Whilst not ROI, it is a meaningful indicator that has more persuasion with a Board than simple visits.

If it is someone contacting you through a form instead of a phone call, what is the reduction in resource overhead by not needing a person to be permanently there?

There are some simple pointers for all organisations that are unable to directly measure ROI through sales or revenue;

1. Start by setting the strategy
   • What do you want to accomplish?
   • What is the current baseline
2. Make sure there is a measurable ‘action’ at the end of the predetermined online journey
3. Make sure that any action has a ‘potential’ value
   • It may be based on cutting expenses
   • It may be based on projected funding
   • It may be based on the individual
4. Keep measuring and learning; Discovery is a continuous improvement methodology.

If you would like to take some time strategically planning how to determine and measure the level to which your organisational objectives are being met online, why not call us now and set up an informal meeting?

Following Paul Grant’s recent video conversations at ePharma Summit in Philadelphia, I interviewed delegates at the Pharma eMarketing Summit in Berlin. Like Paul, I asked delegates what healthcare engagement meant to them.

The responses, from people at the forefront of engagement in Janssen-Cilag, Bayer, and Pfizer, show some of the current trends amongst pharmaceutical communicators. Patient engagement is an important theme, whilst engaging healthcare professionals in a way that is relevant to them, using social media, is also a key area of focus.

Irina Osovskaya, e-Business Manager at Janssen-Cilag talks about engaging healthcare professionals in a way that is relevant to them, using channels that they want. Bayer Schering Pharma’s Head of Digital Marketing & Sales, General Medicine, Len Starnes points out the value of dedicated social media networks for this kind of engagement.

Alex Butler, Communications Manager with Janssen-Cilag points out that senior managers in pharmaceutical companies now realise that they have to engage online, and are facing up to the challenges of doing so.

René Neubach, eMarketing Manager with Pfizer in Europe reflects on an increasing focus on strategy rather than simply digital tactics in this year’s eMarketing Summit.

You can also view this video, and others, on our Creation Healthcare YouTube Channel.

If you would advice about how to develop a successful digital engagement strategy, why not speak with one of Creation Healthcare’s international team of consultants? Contact us to find out more.

When it comes to supporting patient care in a relevant and engaging way through digital technologies, there is a huge amount of potential yet to be exploited. Last year we wrote about ‘serious games’ for health, and Creation Healthcare’s Susi O’Neill outlined how technology can be used to make healthcare fun.

Serious games can provide a refreshing change for patients with long term diseases when it comes to their treatment, which could be especially effective in treating children with chronic diseases. That’s the thinking behind Bayer’s DIDGET™, a blood glucose meter designed for children with diabetes. As Sandra Peterson, Head of Bayer Medical Care explains:

“Up until now, blood glucose monitors have been created with adults in mind. This product was inspired by a parent of a child with diabetes, to directly address the challenges facing kids with diabetes and their parents. Bayer’s DIDGET meter offers play with purpose to encourage kids to regularly monitor their blood glucose and begin to view regular testing as fun.”

Connecting with games systems

The DIDGET™ system connects directly to Nintendo™ DS and DS Lite gaming systems, awarding points for good testing habits. After testinjg, children can transfer points to their Nintendo™ games devices and redeem them for new characters, costumes or mini-games.

Bayer’s DIDGET website includes a demonstration of the product and how it works

John Gregory, Professor in Paediatric Endocrinology at Wales School of Medicine, Cardiff University explains why this is important:

“One of the biggest challenges facing parents of children with diabetes is the constant struggle to instil the habit of regular blood glucose testing…”

“Bayer’s DIDGET meter can help ease the parent/child tension that testing often creates by adding an element of fun and rewards to the routine. Because it is designed with children in mind, Bayer’s DIDGET meter can transform a child’s blood glucose testing experience from something they have to do into something they want to do.”

Initially available only in the UK and Ireland, DIDGET was launched in Vienna at the Annual Meeting of the European Association for the Study of Diabetes (EASD) last September and is expected to be available in the US, Croatia and Slovenia shortly. In the US, the FDA (the US regulator) cleared the product last December.

What patients are saying

The launch of DIDGET in the UK has generated much industry and media interest, and a great many blog and social media posts mentioning the product. We carried out some simple research into social media conversations about the product, and found most of them to be from observers in technology companies and industry observers.

What we really wanted to know was what diabetes patients using the product thought of it. Naturally, with the product aimed at children aged between 5 and 14, we didn’t expect to find a highly active community of UK bloggers amongst target users. We did, however, find discussions amongst parents of children with diabetes based outside the UK expressing disappointment at not being able to obtain the product in their markets.

Amongst UK social media activity, it was interesting to learn that the product is not only being used by children. Analysing social media conversations amongst UK diabetes patients, we found comments such as this one, from a 23-year old diabetes patient living in England:

“The other meter I’ve been using at work for a few month now is the Bayer Didget. This meter is similar to the contour (uses same sticks) and I like it as you have the option to mark each test with a pre-meal, post-meal and small book marker on the system. Tests are quick (5secs) and don’t need much blood, so I prefer it to most others.”

The same user also comments on the game:

“The didget works with the Nintendo DS, it comes with a game and the tester can be plugged in the DS and good test results will reward players. The game is average, but I reckon it’d be good for getting kids to control their levels.”

An interesting observation from these comments is that it is the tester’s ease of use that appeals to the adult user of the product. Perhaps there’s a lesson here for medical equipment manufacturers: design for children, and adults will appreciate your products too.

When we announced the Healthcare Engagement Strategy Award winners in January, we awarded PatientsLikeMe the ‘Changing Healthcare Award‘ for having the engagement strategy we felt was most likely to change healthcare. Speaking with PatientsLikeMe co-founder Ben Heywood, it was clear that there was much more to come from the team behind what must be the world’s largest and fastest-growing set of specialist patient communities.

This month we’ve taken a look at new developments at PatientsLikeMe, including some exciting partnerships with pharmaceutical companies.

Novartis gets closer to patients

Earlier this month, PatientsLikeMe announced a new collaboration with Novartis to create a community for organ transplant recipients. It’s a brand new community and already includes over 600 patients.

Novartis CEO Joe Jimenez outlines why connecting with patients online is important for shaping the way Novartis works:

“We need to be closer to patients to understand their experience and their needs. An online experience allows patients to open up and share in a more personal and frank way.

“Our commitment to supporting this transplant community will shape the way we do our work, and ultimately help improve transplant patient outcomes now and in the future.”

This is the 12th disease community for PatientsLikeMe, and the second PatientsLikeMe community supported by Novartis who have already been actively involved in the multiple sclerosis (MS) community. In 2008, Novartis were amongst the first pharmaceutical companies to use social media for clinical trial recruitment when they engaged PatientsLikeMe’s MS community to boost registrations for a study.

UCB looks for adverse events amongst epilepsy patients

On the day we named the Healthcare Engagement Strategy Award winners, PatientsLikeMe announced a new epilepsy community in partnership with biopharmaceutical company UCB. In its first two months since then, the community has already grown to over 1,000 patients.

The partnership includes an interesting proactive patient safety initiative designed to capture adverse events associated with approved UCB epilepsy therapies, and report them to the FDA (Food and Drug Administration, the U.S. regulator).

Iris Loew-Friedrich, UCB’s Executive Vice-President, Chief Medical Officer says that the partnership with PatientsLikeMe will help UCB to understand patient needs:

“We believe this community will be a source of information that will allow us to better understand people living with epilepsy and may help us design clinical programs that incorporate real-world patient needs and experiences in a measurable way.”

Pharmaceutical companies: how to connect with patients

Pharmaceutical companies have many reasons to engage patients – for clinical trial recruitment; to learn about the needs of patients; to learn about use of their products; to educate patients about their treatment options – the list goes on.

Working in partnership with existing or emerging patient networks can be an excellent way to rapidly reach thousands of relevant patients online.

If you are looking to make the most of the Internet to engage patients, Creation Healthcare can help you to identify and develop suitable partner relationships, plan for their success, measure results and understand the strategic impact of the partnership.

Contact Creation Healthcare if you would like a confidential discussion about your patient engagement needs.