GLOBALHealthPR supporting the occasion with denim ribbons

Most importantly, today is World Rare Disease Day and because of this we spent the greater part of the morning discussing the cold hard fact that medical research innovations alone cannot help patients with rare medical conditions. Our keynote speaker, David Kwasha, Managing Director of Alexion Pharmaceuticals, delivered a powerful message and queried why patients should be denied access to treatments for rare diseases. “Why should any human be discriminated against access to life-saving therapy simply because their disease is ultra-rare? Considering the majority of ultra-rare diseases are often the most life-threatening diseases seen in medicine, and commonly affect infants, children and young adults, we need much greater collaboration between government, industry and the general public in this exciting era in which science is unlocking breakthroughs,” said Mr Kwasha. He challenged partners to devise effective communications-driven strategies to address the dilemma of reimbursement for treatments for ultra-rare disease.

Despite their overwhelming effectiveness (with NNT’s of 1:1 in many cases, according to Mr Kwasha), the outlook is not certain for these patients. “Patients with treatable illnesses are denied potentially life-saving therapies based on the small numbers alone,” according to our  GLOBALHealthPR Chair, John Seng. “Too many governments are saying, ‘Sorry, we don’t have the money for you.’ But we believe that healthcare authorities will respond to not only evidence, but pressure from advocates. It comes down to effective communications.”

At GLOBALHealthPR, we believe this issue needs urgent attention, and are delighted to help rare and ultra-rare disease patients gain access to the life-saving treatments they need. To keep up with the conversation, follow @globalhealthpr and the #AGM14 hashtag on Twitter.

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Exactly four weeks from today, our health communications executives from over a dozen countries will gather in Sydney, Australia for the 14^th annual GLOBALHealthPR Annual General Meeting (AGM). Chaired by Spectrum, GLOBALHealthPR is the largest privately-held organization dedicated exclusively to science and health communications worldwide. Our partners at VIVA! Communications will host the meeting, and we can’t wait to attend.

It’s fitting that our host country this year is the birthplace of such indispensable health discoveries as the ultrasound, cochlear implant and plastic corrective lenses (the reason eyeglasses don’t shatter as they did in the old movies). Fun Aussie Fact:  Did you know that something you are probably using right now –  wi-fi – was invented in Australia in the early 1990s? The country has a track record of being a hub of creative scientific thinking, and the 2014 AGM is sure to be no exception.

Why We’re Here

Our three-day AGM is a chance for our partners to hear updates on the progress of each partner firm and the GLOBALHealthPR network as a whole throughout the year. As one global team, it is a chance to re-visit the principles that unite us, share best practices, and explore the latest in healthcare trends.

Why I Can’t Wait

For me, this is a time to revisit the collective highs and lows of the year by reflecting on our accomplishments and responding to the challenges ahead.  Just as challenges are not limited to the confines of one country, our partnership is rooted in the mutual understanding of the nature of our work and how it flows across borders and languages. It is an opportune time to listen to our partners, discuss goals, and to chart the course for the next year.

What am I most looking forward to? It’s hard to keep it to just one thing. My top five are:

1. The chance to energize our partnership by reuniting with old colleagues and meeting new ones;
2. To reaffirm our commitment of providing best-in-class science and health communications solutions on a global scale;
3. To refine how we communicate our brand;
4. To explore new concepts, trends, and places (hey, it is Australia after all!)
5. To share the latest trends with the world (look for our eye-catching GLOBALHealthPR 2014 trends report, coming soon)

A Round-the-Clock, Round-the-World Commitment

What is it that inspires us to take phone calls at midnight (Sorry Paul!), or to cross continents for pitches and medical congresses? Ultimately, I think all partners would agree it’s the shared spirit of client service and the passion we have for improving people’s lives through science. You, too, can participate by following @GLOBALHealthPR and interacting with us at #AGM14 on Twitter.

Are you ready to pack your bags?

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Analyzing recent disaster communications, both successful and failed, can provide important insights for managers and politicians alike when facing the unexpected.

The hours and days immediately following a profound disaster can shape institutional and political reputations for years to come. Events such as the tragedy of Typhoon Haiyan in the Philippines can overwhelm the under-prepared; even country leaders can fall victim to insufficient planning. Lack of preparation can lead to a lacking response to disaster, as leaders scramble to answer the public’s justifiable demand for information and assistance. In recent years, three characteristics of outstanding disaster emergency communications have emerged.

Establish an integrated crisis communications plan before disaster strikes.

Communications should be integrated into any crisis response plan. Don’t wait until a natural disaster occurs to begin developing your communications plan.

President Aquino
Credit: Nicolas Asfouri / AFP – Getty Images

In the case of Haiyan, President Aquino’s public announcement from his presidential palace one week after the typhoon hit did little to ease the public fear and uncertainty during the growing humanitarian disaster. On Monday, Aquino attempted to address criticism by pledging to stay in Tacloban until progress had been made in the recovery process. The impact this may have on the recovery process remains unclear.

The spread of misinformation can stem from an insufficient crisis communications plan. The Japanese government’s response to the Fukushima disaster is a textbook example of how unclear messaging can lead to exaggerated perceptions of health risks. Gerry Thomas, who runs the Chernobyl Tissue Bank (CTB) at Imperial College London, stated, “They’ve got a huge problem out there — largely a PR problem; it’s not a health problem because none of this is going to do anything health-wise.”

Lead transparently with a unified message.

Most importantly, a unified message – free from political or company bias – is essential when responding to a crisis. All too often, political rivalries and blame games hamper relief efforts and damage an official’s reputation. In the wake of Haiyan, there have been widespread reports of infighting between national government officials and local politicians. Questioned by journalists, Tacloban’s mayor strongly criticized the central government, stating, “Perhaps I can say that Metro Manila was prepared for Yolanda because the typhoon didn’t hit it…”

MIT experts have cited infighting as a key reason why relief efforts were bogged down after Hurricane Katrina caused widespread despair along the Gulf Coast of the United States in late summer 2005. MIT supply chain expert Yossi Sheffi, author of The Resilient Enterprise: Overcoming Vulnerability for Competitive Advantage, writes, “Instead of taking decisive actions, city, state, and federal officials argued with one another; communications broke down, and too many civil servants … did not have the urgency or the passion required.” When lives are on the line, it’s crucial to stay set aside politics and biases in favor of unification and the greater good.

Give credit where credit is due.

True heroes are often everyday citizens – first responders and survivors—who fight against all odds to survive and help others. These achievements should not go unnoticed and may be a positive focus for messaging. For example:

• Following a deadly 2007 Virgin train crash, CEO Sir Richard Branson spoke only positively of staff and responders. By directing his praise toward the quick reactions of the crews, including the train engineer, he took a risk that paid off; according to Communicate magazine, Branson emerged from the interview with an enhanced reputation.

More recently, Australian Prime Minister Tony Abbott followed a similar strategy in his response to the Blue Mountain wildfires. He commented, “These are ordinary people who, on an extraordinary day, come together to support their community and to protect their fellow Australians. We are incredibly lucky to have them.” Abbott enjoyed a spike in his approval ratings.

When forming disaster response plans, it is essential to not only have a plan, but also to be prepared to communicate that plan in a transparent way. As we can see with these case studies, crisis response can either enhance or sink a leader’s reputation. Disaster response is just as much a communications mission as it is an aid and recovery mission.

To donate to ongoing relief efforts, please visit www.redcross.org.

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Diabetes prevalence is on the rise and has reached epidemic levels in China. According to a new study in the Journal of the American Medical Association (JAMA), the percentage of Chinese with diabetes has surpassed that of the U.S. In China, 11.6 percent of adults – 114 million people – have diabetes. Most alarming, only 30 percent of Chinese with diabetes are aware they have the disease.

Ninety-five percent of Chinese citizens have health coverage and overall health spending in the country might hit $1 trillion by 2020. Despite these expenditures, there is still a major shortfall in identifying, screening and treating populations who are at-risk for diabetes.

How do health care providers and government leaders address this?

In China and elsewhere, urgent action is needed to expand screening initiatives to reach more patients. Bi-directional screening, where testing for an infectious illness (such as TB or HIV) is combined with a non-communicable disease screen (such as diabetes or cancer), could be key. This allows health professionals to integrate new programs into already-existing clinics. In China, the World Diabetes Foundation and World Health Organization have shown some promise in integrating diabetes and tuberculosis screenings.

However, if any real, measurable progress is to be made in reducing the 70 percent of undiagnosed diabetes cases in China, we must go beyond the traditional tactics of stakeholder meetings and training sessions that often result in only a few thousand screenings. While meetings and trainings are essential to global health intervention, they must not be considered primary tactics.

“Capacity building” is a buzz term popular in development and public health NGO spheres. If real capacity is to be built in China and beyond, we must change the paradigm of how we measure success of chronic health interventions. We should aim to screen hundreds of thousands (if not millions) of people. We must also aim to implement improvements in dozens or hundreds of hospitals & clinics, not just a few.

I’ve been screened: Now what?

Ultimately, screening initiatives fail if newly-diagnosed patients do not have access to treatments. Here are three ideas to achieve success in the fight to reduce diabetes:

• Patient education should accompany screening or treatment programs to reduce the disease’s progression.
• With more than 2,000 Mobile health applications in China already, mobile “doctors” could reinforce patient education, particularly where caregivers are in short supply.
• The Chinese government must work with payers, employers and international partners to create sustainable, market-driven models for the distribution of treatments and medicines. The private sector is essential in this effort, as was noted in a People’s Daily report this June.

The new JAMA study suggests the Chinese diabetes epidemic is greater than previously imagined, but it is not an insurmountable barrier. International partnerships are essential to overcoming the burden of diabetes in China, and it’s time for all players to re-think how they can maximize ROI on screening and treatment interventions.

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In the last couple of weeks, mainstream media and bloggers alike have picked up on the results of a recent study that links Facebook use to feelings of sadness, worry and loneliness. Are Americans alone with these feelings? Can the findings be generalized for the nearly 1 billion Facebook users outside the United States? Fortunately, we have a few answers.

Conducted by researchers at the University of Michigan, the study evaluated Facebook use of 82 people in Ann Arbor, Michigan. Study participants received five text messages per day linking to a survey on how they felt and how much they had used Facebook since the last text message. The results: the more participants used Facebook, the more their life satisfaction levels declined over time.

Germany: Is Facebook envy a mental health problem or motivating factor?

Last year, a German study of nearly 600 Facebook users at Humboldt University and the Technical University of Darmstadt found similar results. In the study, twenty percent of respondents felt sadness due to a lack of attention, referring specifically to a lack of likes, comments or shares their posts generated. Another ten percent reported loneliness– sadness due to the lack of face-to-face contact with people they are friends with on Facebook. This is likely similar to feelings experienced when one moves to a new city or experiences a break-up (to unfriend or not to unfriend?).

The most common negative feeling generated when German users logged into Facebook was envy – discontent at the life experiences Facebook “friends” share. Authors divided envy into benign and malicious. Participants categorized as malicious had negative self-esteem effects, and positive envy led to better “learning and motivation, performance and achievement.”

The UK: Agreement on Facebook blues, but don’t disconnect the kids

Internet psychologist Graham Jones provided a British perspective on the Michigan study. ”It confirms what some other studies have found – there is a growing depth of research that suggests Facebook has negative consequences,” he said. However, don’t disconnect the youth from the internet too fast. Sixty percent of UK teenagers who recently took part in a Digital Trends study responded that they would feel lonely without the internet.

Brazil: A sign of “The Tostines Paradox?”

In Brazil, Facebook has overtaken longtime market leader Orkut. When the Michigan study was released, Brazil’s active blog community was quick to allude to the famous “Tostines Paradox.” The Tostines Paradox is based on a famous 1980’s cracker brand slogan that asks: “Do the crackers sell so much because they’re so fresh, or are they so fresh because they sell so much?”

Are we sad because we Facebook, or do we Facebook because we are sad? Either way, the takeaway is this: if you’re feeling envious of the beach vacation your friend just shared or feeling blue because your latest post received no likes, disconnect from digital media and try sharing your stories face-to-face.

Facebook use predicts declines in affect and life satisfaction over time (Source: Kloss and Associates, 2013)

 

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A week of groceries in the United States
Photo: Peter Menzel/Time Magazine

Last weekend, while walking down 14th Street Northwest in Washington, DC, I was fascinated by the international flavors that surrounded me. On the left: French, Japanese, Thai and Ghanan restaurants. On the right: American fried chicken, Salvadoran, Mexican, Italian and Ethiopian restaurants. The options are as diverse as DC’s population itself. They are also a reflection of migration flow in an increasingly globalized world.

Having a diverse array of food options is great for the picky consumer, but how is culture impacting what we eat at home week-in and week-out? Recently, a viral photo essay depicting what families around the world eat in a week circulated the internet. The photos, from journalist Peter Menzel, shed light on the important question of culture’s impact on our nutrition. It’s eye-opening to see how frequently Coca-Cola and Kellogg’s products from the United States find their way onto tables across the world. It’s also easy to see the lesson American families can learn from Guatemalan and Pakistani families on fresh fruit and vegetable intake.

The bigger question is this: What can be done globally in an age of unhealthy eating and increasing obesity? The Economist pointed out, importantly, that the percentage of the world’s population that is obese has doubled since 1980.

A week of groceries in Guatemala
Photo: Peter Menzel/Time Magazine

The authors further state that more people in developing countries are overweight than underweight. In addition to widely-known risks of heart disease, diabetes and cancer that are associated with poor nutrition and obesity, the economic costs are staggering–over $100 billion per year in the United States alone.

In just over a month, the International Congress of Nutrition (ICN) will kick off in Granada, Spain. There, dozens of researchers will present their most recent findings to nutritionists, dietitians and public health policy experts from around the globe. During the congress, the presenters will attempt to shed light on these questions and more. All aspects of nutrition will be covered, from maternal and youth nutrition to the latest in food technology and policy.

GLOBALHealthPR partner Berbés Asociados is supporting coverage of this important event. GLOBALHealthPR is proud to support this year’s congress as it joins cultures through nutrition.

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It’s a pleasure to announce that our GLOBALHealthPR partner in Portugal, Guess What PR, has won the Merit Award for Excellence in Communication in the category of Communication and Social Responsibility during the Portuguese Association of Corporate Communication (APCE)‘s 2013 Awards event! The annual APCE Gala was held in Lisbon on the evening of Tuesday, 16 July.

The six-month awareness campaign was aimed at increasing the knowledge of the Portuguese population of ovarian cancer in order to change perceptions and diagnostic habits. The Guess What team did a wonderful job not only on the strategic and creative process, but also on the communication of the campaign, which included both traditional and digital media channels.

This marks the second major industry award  in as many weeks for the GLOBALHealthPR partnership. We are proud of Guess What and the rest of our GLOBALHealthPR partners, who work tirelessly to deliver smart, savvy healthcare communications solutions worldwide.

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Communiqué Awards 2013, London

London was the site of the first awards celebration this month for GLOBALHealthPR. On 4 July, our partner Aurora won Communications Consultancy of the Year and Excellence in Communications via Meetings and Congresses for the Share+social media educational meeting for Roche Products.

The awards recognise and commend excellence and best practice in healthcare communications and this year Aurora were finalists in an unprecedented seven categories spanning media, digital, advocacy and patient focused programmes.

The whole team is thrilled that its smart thinking approach has paid dividends. Aurora staff love working hard to deliver creative and innovative campaigns for our clients and it’s even better when that work is recognised by the industry.

Winning these awards isn’t the end of the journey though, it’s only the beginning. Aurora will keep getting better and aiming ever higher. Join GLOBALHealthPR partner Aurora as they continue their journey. Get in touch and see how they can help you deliver award-winning programmes.

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This June, Aurora, GLOBALHealthPR’s partner in the United Kingdom, opened the doors to its brand new office in the famous Hatton Garden district. The new space reflects the Aurora philosophy of “Happy clients + happy team = great work.”   See a glimpse of their new headquarters from where they will continue to provide smart-thinking healthcare marketing and communications to their clients. Congratulations to Neil, Claire and the Aurora team!

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