Carers Need Care Too

By the Tonic UK Team

As a healthcare communications agency we are dedicated to supporting the patient community, and working to improve the lives of patients and their families. But the work we do often extends to carers as well, who have a vital role in the care of patients.

This week is national Carers Week in the UK – an annual campaign dedicated to supporting the millions of unpaid carers across the country who look after a parent, child, partner or friend with a disability or illness, or who need age-related support.

The campaign aims to raise awareness of the challenges carers face, recognise the contribution they make and share ways to connect and support carers, so they can stay healthy and connected.

Healthy and Connected is the theme for this year’s campaign to highlight the importance of the health and welfare of carers.

Carers Week aims to shine a spotlight on the needs of carers both within the community, in the workplace, in schools and across health services. The goal of this week is to advocate for carers to get the practical help they need such as flexible working hours and remote working. Sadly, 72% of carers have to give up work to care for their loved one, so flexibility in the workplace is crucial to help reduce this trend.

What does this mean for our industry?

Pharmaceutical companies work closely with patient organisations to support and better understand the needs of the patients they work to treat, and some are now launching new initiatives to gain more knowledge about the growing carer community. Last year Merck carried out an international survey of 3,500 carers to uncover the everyday challenges that carers face in looking after their loved one. The research found that 47% of carers had feelings of depression, while 54% did not have time to attend their own doctors’ appointments. It also found that a concerning 55% of responding carers felt that their own physical health had suffered. Merck said the results speak for themselves, and have since launched an initiative called Embracing Carers, which strives for increased awareness and support for the carer network worldwide.

A Government report from last year found that 25% of carers had not had a day off in over five years. Ministers state they are now looking at a new action plan to improve carer provisions as part of the UK’s social care strategy.

More needs to be done to recognise and support this invisible army.

Carers across the UK – Fast Facts (from Carers Trust)

  • There are around 7 million carers in the UK – that is one in ten people.
  • Three in five people will be carers at some point in their lives in the UK.
  • Out of the UK’s carers, 42% of carers are men and 58% are women.
  • The economic value of the contribution made by carers in the UK is £132bn a year.
  • By 2030, the number of carers will increase by 3.4 million (around 60%).

Follow @carersweek on social media to learn more, and use #carersweek to join in!

Cancer 2018: The Promise of Hope; The Danger of Hype

By Dana Lynch, Executive Vice President, Global Strategy & Business Development

There is absolutely no arguing that academia and the life sciences industry now have an incredible understanding of why and how cancer happens.  New diagnostics and genetic markers, less invasive surgical and radiology procedures, and revolutionary personalized immunologic therapies for managing cancer have dramatically altered the way in which we approach the disease.

As a healthcare communications professional with more than 20 years of experience, I understand the value that PR, marketing and journalism can have in educating and encouraging audiences to learn more about innovation and driving adoption of novel, improved treatment.  I am proud to represent the incredible pharma and biotech companies, scientists and physicians that are committed to improving cancer detection and care, with the common goal of someday eradicating the disease entirely.

Unfortunately, the news and information surrounding these advancements too often gets abbreviated, even sensationalized.  They’re packaged into short headlines, 30-second sound bites or 60-second ads, featuring marketing speak as well as quotes from doctors, patients and celebrities who testify to the battles we are winning against cancer without putting the reality of the continued losses into perspective for the average viewer or listener.  In other words, some manufacturers and cancer hospitals, and very often the media, are generating a lot of hype with the hope they are dispensing.

Imparting hope is certainly critical when reaching out to those impacted by cancer, but I fear that simplifying the reality of a diagnosis with only hopeful and promissory messages, while treating “fair balance” and the realities of metastatic disease as white noise, can backfire.  In many cases, people read cancer-related headlines about the promise of today’s treatments and end up feeling defeated when they realize that this potential progress doesn’t actually apply to them.

My Family’s Experience with Cancer

Now before this comes off gloomy and cynical, let me declare that I have the unfortunate perspective of seeing cancer for what it still is – unpredictable, like life itself, which is evident when reflecting on the cancer journeys of both of my parents.  It is a disease that no oncologist can promise with 100 percent certainty to be able to manage, or cure.

Let’s start with my mother:

  • Diagnosed in 2006 with early Stage 1, hormone-positive breast cancer, HER-2 negative.
  • It wasn’t in her lymph nodes and was treatable without having chemotherapy – the oncologist, surgeon and others who had experience with breast cancer all emphasized this cancer was not just treatable, it was supposed to be beatable.
  • Just four years later, her cancer returned as metastatic disease in her spine and her liver. This time, the promise was that the cancer was treatable, just not curable.
  • In 2016, after six good and bad years of cycling through a variety of treatment regimens, including some of the newest, most promising options, my mom passed away.

Now, let’s consider my father:

  • Diagnosed with Stage 2b Non-Small Cell Lung Cancer in 2008; his tumor was large and not in an optimal location for surgery.
  • Although considered treatable, the survival statistics were not great and without surgery, treatment options were very limited (none of today’s immunotherapies, Keytruda and Opdivo, were available at that time).
  • After intensive radiation and a harsh chemotherapy regimen, his tumor almost miraculously disappeared.
  • Another small tumor appeared one year later, but a surgeon could remove it without requiring additional chemotherapy or radiation.
  • Now, 10 years later my dad (*knocking on my desk*) is cancer-free.

In a simple summary, it didn’t go as expected –my dad beat the odds, my mom did not, bringing me back to the “promises” being made through direct-to-consumer messaging.  It is important to remember that while we live at a time where improved therapies can help us live longer, more productive lives with cancer, we haven’t yet figured out how to fix cancer in every patient and in every scenario.

A Charge for the 2018 ASCO Annual Meeting

This month, a large portion of the international oncology industry will convene in Chicago for the American Society of Clinical Oncologists Annual Meeting.  I know my knowledge and experience with cancer is limited relative to the cancer clinicians and researchers, but I have enough experience from the past 12 years to give some impassioned advice to my clients and other companies in the oncology space, the PR and marketing people who work on their behalf and the media who will cover the meeting.  Please be careful with the promises you are making to patients.  My mother always said, “a promise made should be a promise kept.”  There will be a day when all patients can be treated to cure for a cancer diagnosis, but until we can make this promise, let’s be sure we take care with what we say and maintain the hope without too much hype.

The True Meaning of Memorial Day

By Katie Alberico, Senior Account Executive

As the unofficial start of summer, Memorial Day is a weekend many see as a celebration with friends and family. Rentals opening, shore towns coming back to life, burgers and dogs on the grill with the promise of warmer weather on the horizon. But Memorial Day is more than just a day or weekend for me; it’s woven into my everyday life.

I always joke that my first full-time job is in PR and my second is being a military spouse. When you marry someone in the military, you’re really marrying their job as well. So, this past October I can proudly say I married the love of my life AND the Navy!

Taking Up a Cause

After the recent F/A-18 crash off the coast of Key West, I was heartbroken for the families who lost loved ones, the friends who lost a squadron mate and humbled by the outpouring of love and support from our community. My husband flies a variation of the plane that went down, and I know we consider his squadron our family, so to see another family lose two of its members is truly heartbreaking.

I can’t change what happened, and I can’t prevent that from happening to me, but what I can control is how I choose to remember those we have lost.

This past Sunday, I decided to put my hobby of running towards a cause near and dear to my heart – The Wingman Foundation.

Their mission is simple, to honor the sacrifices of our fallen air warriors and support the families they’ve left behind. The Wingman Foundation provides critical post-mishap financial relief, funds memorials and remembrance ceremonies, sharing the stories of the fallen, and offers scholarships in their honor.

I’ve run races before – in fact, I’ve participated in Philadelphia’s Broad Street run three times – but lacing up my sneakers was different this time. With fellow VFA-34 spouses by my side, we set out to run the Valor Run 10-mile race in Virginia Beach to raise awareness and funds for the Wingman Foundation. As we crossed the finish line, I realized these friends I have begun to call family have become more then I could have ever imagined.

Tonic’s Personal Connection to Our Work

My involvement with the Wingman Foundation and running the Valor Run reminds me just how important these types of events can be to those who benefit from them. Through our work at Tonic, we hear over and over how patients can feel like a number and not a person, but events like awareness walks or advocacy partnerships bring people together that might not have connected or interacted before. Working directly with patients and caregivers provides us with a first-hand experience that is truly invaluable.

At Tonic, we have an opportunity to meet and empathize with the patients and caregivers we work with, tailoring activities to better fit their needs. As someone whose personal life has been touched by the work of an advocacy group like the Wingman Foundation, I can attest to just how truly meaningful it is to feel like they not only hear you, but understand you as an individual, and I am proud to work at a place that recognizes this.

I will certainly do my share of time with friends over the long weekend, but over the past year specifically, Memorial Day has taken on a new and more personal meaning. This Memorial Day, I hope you will enjoy your time off, revel in the warm weather and remember those who gave all so we can enjoy times like these.

To read more about our personal connection to the work we do at Tonic, like supporting World IBD Day and Rare Disease Day, browse our previous Tonic blog posts.

An Open Letter to Crohn’s Disease for World IBD Day

By Lindsay Barnes, Assistant Account Executive

Dear Crohn’s Disease,

I wish I could tell you to go away, to stop causing mayhem to my body. Do you think I enjoy this constant in and out, up and down? How much can one bum take? You forged your way into my gut without my consent. This World IBD Day, I’m here to tell you that no matter what, I’m in control of my life, not you.

When I was diagnosed with Crohn’s disease in August of 2012 – a major category of inflammatory bowel diseases (IBD) – you didn’t define who I was as a person; you just changed the way I lived my life and what I considered to be normal. Going to the bathroom 15 times a day was my new normal. I wasn’t prepared for the long road that was ahead of us – the numerous tests, medications, surgeries, and pain that would follow my diagnosis.

In fact, up until I was diagnosed with Crohn’s I had no idea what it was, or that more than five million people worldwide live with Crohn’s disease or ulcerative colitis. I remember coming out of my first colonoscopy wondering what my life would be like. What would happen if I had an IBD? Would I have this disease for life? And was it true what my doctor had said about there being no known cure and that nothing I could do would help me to heal? I was told there was nothing I could do but wait to see how my disease progressed. Now you really started to rub off on me; I had quite the potty mouth.

The funny thing about IBD (other than poop jokes) is that no two patients are the same. We don’t all have the same symptoms, the same reactions to certain foods, see the same results from medication or have the same body type. We’re all scurrying through a maze of trial and error, trying to figure out what works best for our bodies, while also trying to manage the emotional journey that comes with your poop life.

One thing I know to be true about IBD is that we all experience similar emotional setbacks. Trying to make someone understand that when I say I need to use the bathroom, means I need to NOW. Attempting to balance two types of relationships – the one with my better half and the one with my bottom half. The awkwardness I feel when I’m having a good time and suddenly you make me run to the bathroom. And one of the worst feelings of all is feeling so incredibly isolated due to my condition. Who wants to be with someone who spends more time in the bathroom than actually with their company?

It’s taken me almost six years to be able to talk freely about you, and what I do know now is that having a voice is better than living in silence. All of these thoughts, and these feelings of isolation, frustration, and even anger are all okay to feel. There is a way for my body to heal – speaking out about my journey with you in hopes of breaking the barriers for others who feel like they can’t speak their truth. Living with Crohn’s disease doesn’t have to be as crappy as it sometimes feels. By speaking out, my fellow Crohnies and I have the ability to change the narrative. You may not know this, but we see that this life is a beautiful place to be in when our heads aren’t burrowed between our knees.

At the end of the day, I want to raise as much awareness as possible for everyone who suffers from these ‘invisible’ illnesses.

Sincerely,
Lindsay Barnes, Crohnie

P.S. To my fellow Crohnies: Remember, there is no IBD path; it is important to carve out your own story, and find out what works for you. Sharing your personal journey or experiences with IBD can help someone else feel less alone, less ashamed, and more empowered to be a voice of change.

I hope others find the courage and strength to stand up to IBD and scream out – YOU DON’T OWN ME!

Happy World IBD Day – from one bum to the next.

Go Ahead…Copy Our Notes: Insights from the PRNews Measurement Conference

Co-Authored By: Kate Callan, Senior Vice President, Social Strategy; and Silje Lier, Senior Account Supervisor

Hundreds of PR professionals flocked to our backyard for this year’s PRNews Measurement Conference, a two-day workshop held here in Philadelphia. Presenters and attendees represented a variety of sectors and industries – from Fortune 500 companies to boutique agencies and academic institutions. What they have in common is a need to understand their audiences, measure their PR efforts and, ultimately, tie them to their bottom line.

The conference covered a lot of ground on utilizing analytics. Here’s our summary of best practices for strategic and impactful media measurement:

  • Define your key performance indicators (KPIs) early. What do you want to achieve? Agree what success looks like, and bake data measurement into the planning process of a campaign. If you don’t align on goals at the start, you can’t showcase success. This will also speed up assessment and reporting at the completion of a campaign/quarter, when there may be pressure or eagerness to provide results.
  • Map conversations, and identify super-connectors. We all know social listening is critical. Focus not just on the noisemakers, but identifying the influencers who keep the social media community members connected. These users will be more likely to drive a call to action among their networks, or make a key connection.
  • Create smart dashboards. Share key outcomes with data visuals pulling from online measurement tools, as well as native social media analytics, and understand what those metrics mean. Don’t forget to include benchmarks for context. (BONUS: Here’s a PRNews recap of Kate’s presentation from the conference, with a sample performance dashboard from Tonic, and other tips on native analytics and social listening.)

Presenters at the conference were asked to share a to-do list containing broader takeaways from each of their talks, which we’ve curated into a cheat sheet to apply to our PR efforts. Click the thumbnail below to view our full infographic for do’s and don’ts in data measurement – and share it with your followers.

If you would like to discuss our approach to analytics, reach out to Kate.Callan@toniclc.com. And to keep up with future events and more from the Tonic team follow us on Instagram (@Toniclc) and add us on Twitter (@Toniclc)!

What’s artificial intelligence got to do with it?

By Grainne Maguire, Director, London, UK

Artificial intelligence (AI) and what it will mean for mankind is a hot topic in the media now. We are, we are told, at the beginning of the next wave of an industrial revolution, the fourth industrial revolution (4IR) and this time, the wave is being driven by AI. While Elon Musk said that AI ‘is a fundamental risk’  to human civilisation and the late Stephen Hawking warned against the dangers of it replacing humans, there isn’t any doubt that AI is here to stay. We already use AI and machine-learning technologies in everyday life, whether it’s setting prices on Amazon, tracking your Deliveroo order to your door, or receiving recommendations for music you like on Spotify.

AI in Healthcare

What I’m intrigued by, however, is what is happening on the health front and what can be achieved there. The adoption of AI in healthcare is growing. Predictions from the new report Worldwide Health Industry 2018 Predictions, from research and consulting firm IDC Health Insights, say that ‘by 2021, 20 percent of healthcare and 40 percent of life science organisations will have achieved 15 to 20 percent productivity gains through the adoption of cognitive/AI technology.’ For the healthcare systems and patients, that must be a good thing, leading to improved care for patients and a more sustainable future. AI tools are already in use in major disease areas e.g. in cancer-analysing clinical images to identify skin cancer subtypes, and an AI system for neurology used to restore the control of movement in patients with quadriplegia. Researchers have also used machine learning to identify how individual stroke patients might respond to different medications based on the unique structure of their brain!

There’s no doubt that AI can do seriously impressive stuff and it’s no surprise that Google, Microsoft and IBM have recently moved into the AI healthcare space with Apple and Amazon expected to follow suit. But for most of us AI is an enigma and we need more understanding of this emerging technology and how it impacts our health and wellbeing. Hopefully, if it’s handled right, AI will bring substantial benefits in managing our health without risk to our independence, and certainly we need help in collating those mountains of data!

What do you think about AI? Tweet us @TonicLC to share your thoughts.

 

What I Have Learned from Working with Patients

By Chrissie Hannah, Senior Account Executive

It’s one of the key buzzwords in pharma – patient-centricity. All companies say patients are at the heart of what they do; if they don’t, they certainly strive for it. The online space is rich with articles on how this can really be achieved and how it’s measured, but ultimately there is nothing more valuable than that face-to-face time with the patient, getting to know them, and genuinely caring about helping them.

Over the last year, I have had the privilege of working on a particularly inspiring project, partnering with patients, for patients. On behalf of one of our clients, we aimed to develop an awareness campaign that showcases the lives of six women from around the world, to highlight what survival means to those living with terminal breast cancer.

What first struck me was that patients really want to get involved. I had imagined there would be difficulties finding someone willing to share details about their difficult journey and terminal diagnosis. However, the ladies involved not only agreed to take part, but were very passionate about the campaign. They wanted to help us spread the message of positivity to others suffering with this terminal illness.

We interviewed them over the phone, then spent time in their homes for a photoshoot. As we listened to each of their stories, and got to know them the more time we spent with them, I realised I had started to become emotionally invested in the work. The campaign objectives had already been established, and were still being met, but after speaking with these patients I started to have an additional purpose. I could see that the project was really helping them. As they talked openly about their diagnosis, life, family and the future, they seemed to find it healing, almost therapeutic.

The finished product was a beautiful bound book of each patient’s photos and stories. The feedback received from the women involved was overwhelming – they loved seeing other stories alongside theirs, and felt more motivated than before to share their own story. Although the full project is not yet complete, it shows this first part of the campaign achieved results on many levels.

Of course, this is just one disease area with a specific audience. However, I have learned so much from this wonderful, inspirational group of women. By connecting with patients at this level, you can really get to the heart of their thoughts, hopes and fears – and could end up helping them in more ways than one. Working this closely with patients on such an emotive and powerful project reminds us of the greater good in our work, and why we do it.

 

Five Insights into How Millennials Want News

By Alyssa Morrello, Senior Media Relations Specialist

Newsflash! My fellow millennials and I are completely changing the way newsworthy content is being created, shared, consumed, and cultivated.

While previous generations depended on regularly scheduled television newscasts, the same cannot be said for the “on-demand” nature that digital news provides today.

In fact, digital outlets currently serve as the main source of news globally for the majority of those under 35, including 64% of those between the ages of 18 and 24.

This month I had the opportunity to learn more about “America’s First Digital Generation” with VICE News. Here are five key takeaways for getting the attention of the millennial audience.

  • Show, don’t tell. With an overabundance of news sources (digital, traditional, and even social!) millennials can read a headline anywhere and get a general gist of the news. Expanding beyond the “telling” of the news and actually “showing” the effect is what will capture our attention.
  • Provide a different perspective. When given the opportunity to provide a new perspective or spin on things, do it! VICE had outstanding results when they chose to cover Hurricane Harvey by doing a story on how Houston was designed to be flooded. We knew the hurricane was a disaster that was ravaging the community but were unaware of the infrastructure angle VICE provided, which is why it drove remarkable results.
  • Have your characters in place. A story, whether it be within the news or even an editorial feature, is not complete without characters. Whether it be a quirky researcher or a young mom, we are looking for humans to add color to the story and make it memorable and easily relatable.
  • Take time to understand your audience’s habits. Tracking audience habits, whether it be via social feeds or page views, is vital. Through tracking and taking time to understand their audience, VICE News realized their viewers and readers were especially interested in the social justice pieces and they now hone in on those aspects whenever possible.
  • Stories can travel across channels if adapted! It is important to provide the news in more than one place, especially because you never know what platform your individual audience members are utilizing to get their information! Putting a story on YouTube, Instagram, and even on a digital platform like an app is great; just make sure to lead with the best stuff and adjust the content length to match the platform.

The main takeaway is that originality is key. When brainstorming innovative ways to bring a story to life, ask yourself, “What will you bring to the story that no one else can?”

To keep up with future events and more from the Tonic team follow us on Instagram (@Toniclc) and add us on Twitter (@Toniclc)!

Three Key Takeaways from Social Analytics Experts

Co-Authored By: Kelly Cross, Assistant Account Executive and Silje Lier, Senior Account Supervisor

Recently we had the opportunity to venture up to Times Square for the NYC Sysomos Summit and got a refresher on all things social analytics. To get you up to speed, Sysomos is an insights-driven social platform that we use for social monitoring, listening and analytics.

At this year’s summit, Sysomos brought together experts from companies like Google, Reddit and WWE, who each shared a unique perspective as to how digital data and analytics drive their business decisions.

The speakers shared what it takes to succeed in the modern digital age. Here are key highlights.

  1. Data is KING. This point was stressed in sessions throughout the entire day—data, data, data. Too often companies push out social media content without taking the time to gauge reactions—both positive and negative—to those posts, or they measure social media performance in a silo. Because social media has become a focal point for new, loyal and potential customers to voice opinions about the product or services offered by a company, taking an integrated approach to analytics is imperative. It not only provides companies with the means to understand its competitors and trends within the space, but also taps into consumers’ opinions which allows a greater understanding as to where improvements can be made.
  2. Listen to your audience to uncover opportunities. We hear this all the time, but blindly posting content without understanding who they’re aiming to reach and why, along with identifying the best platform to reach them, prohibits companies from getting in front of people who are most likely to discover or react positively to their business. Elizabeth Motta, Director of Talent and Data Analytics at WWE, shared how the fan-driven #GiveDivasAChance campaign completely altered WWE’s programming. Social listening led to the creation of a women’s WWE division – and lots of happy fans worldwide (more than 850 million, to be exact).
  3. Don’t be afraid of new advances in technology. Summit speakers pointed to artificial intelligence, voice technology, and increasingly live social experiences (e.g. Facebook and Instagram Live) as trends to look out for in 2018. Be prepared to adapt to available consumer touchpoints and look for smart ways to engage in an era of utility-seeking, status-sharing consumers.

To keep up with future events and more from the Tonic team follow us on Instagram (@Toniclc) and add us on Twitter (@Toniclc)!

Tweet a recap of our takeaways with the infographic below. [Click to view full PDF.]

I Loved Someone Who Was Rare

By Theresa Liddy DolgeChief Media Relations Officer, Tonic Life Communications

Some people never meet their hero, but I gave birth to mine. My daughter, Angelina, was born with an incredibly rare disease called Neonatal Marfan Syndrome, which is a connective tissue disorder. There is no cure.

Angelina was born on February 5, 2008, and just 23 days later, the very first Rare Disease Day was held. I am truly amazed at how far society has come in raising awareness of rare diseases in the last ten years, and I remain hopeful for what the future may hold.

As someone who works in healthcare public relations, I am often part of the very team looking to tell stories like my own to help the 30 million Americans living with rare diseases. Every time I touch a rare disease account I feel uniquely positioned to provide insights only someone who has walked this path would know such as:

  • Get the right diagnosis. Initially my daughter was diagnosed with Beal’s Syndrome. I didn’t learn she had Neonatal Marfan Syndrome until she was 10 months old.
  • Find a support system. I was desperate to find other moms like myself and canvased every corner of the internet to find them. Discovering The Marfan Foundation was life-changing for me. I am still friends with a mom in Australia through an amazing platform they have called NMF Connect.
  • Build an integrated medical team. I saw eight different specialists ranging from orthopedic surgeons to cardiologists. Making sure they all talked with one another and were aware of what everyone else was doing saved me a lot of time.

Perhaps, even more importantly I can relate with many mom warriors of rare disease children because:

  • I have slept on a hospital couch for countless, consecutive nights
  • I have cried in the shower alone because I didn’t want my family to know how upset I was when other kids and parents pointed and stared at my child
  • I have become a ‘doctor without a diploma,’ knowledgeable about all things related to my daughter’s disease
  • I have watched my child on life support and receiving bags and bags of donated blood (so please give blood if you can)

Angelina died in 2010, so being able to continue to work in the rare disease space helps me to feel like my daughter did not die in vain.

I am reminded each year on Rare Disease Day of all we have accomplished and everything we have left to overcome.

The kindest action a person can do is to encourage others despite their own pain.

We are all worth a cure. Never lose hope.