Pharma needs a different dialogue on long-COVID patient engagement and support

Having worked across a broad range of pharmaceutical, charity and digital health campaigns over the past 20 years, we always strive to put the patient at the heart of our communications. Yet nine months into this pandemic, there remains a vast disconnect between patient experiences, national guidelines, understanding and support for long-COVID patients across the UK.  

High temperature. A new, continuous cough. A loss of or change in taste or sense of smell

We all know these now-familiar COVID-19 symptoms to look out for. But there is increasing evidence that many people struck by the virus don’t experience any of these and are barely unwell. Yet others are suffering a vast array of debilitating symptoms not officially recognised as being caused by this still relatively unknown virus.

These “symptoms” weren’t what I experienced either when, in March, gastrointestinal problems struck me down, along with a low temperature, limb and facial numbness, dizziness, muscle spasms and jolting, vision problems, and fatigue. It was so bad I remember telling my GP (over the phone): “My whole body feels like it’s under attack – every bodily function feels like it’s being tested.” Then followed months of neurological tingling, muscle weakness and joint pain.

Round two in September saw the return of the reduced temperature and red-eye, the onslaught of intense headaches, neck rash, fatigue, leg pains, and swollen glands. At least this time, I could be tested to confirm the diagnosis. On day 10, I was encouraged by 111 to go to A&E for suspected blood clots. 

Little is known about the long-term impacts of the virus. Many people are struggling with what has been dubbed “long-COVID”, where they are still suffering terrifying and debilitating symptoms from their brush with the virus – most commonly fatigue, respiratory problems, cardiovascular issues, and joint and chest pain, as well as ocular disturbance, neurological pain, liver function disturbance, and cognitive impairment. 

In August, preliminary results of the North Bristol NHS Trust’s Discover project, which is studying the longer-term effects of coronavirus, found nearly three-quarters of coronavirus patients admitted to hospital were suffering ongoing symptoms three months later. Many were unable to carry out everyday tasks, including washing, dressing, or going back to work. But these chronic problems are not restricted to the patients hospitalised with COVID-19. Recently, Tim Spector, a professor of genetic epidemiology at King’s College London who runs the app-based COVID symptom study, said up to 60,000 people in the UK have been suffering from long-COVID for more than three months and around 300,000 people have reported symptoms lasting for more than a month. 

The Long COVID Support Group has over 23,500 members on Facebook alone. Many are six months into their ‘corona-coaster’, and few have received much in the way of follow-up support or diagnostics for their debilitating symptoms. Fear and uncertainty are rife as family, professional and student lives are in a state of paralysis.

Despite my body not yet feeling my own, I believe I’m one of the lucky ones. Many with “long-COVID” are unable to work at all and even care for their children. Children are suffering with long-COVID too. Some long-haulers are even admitting they are mentally struggling to go on, with no end in sight to the misery this terrible virus has inflicted and with nowhere to turn for help or answers.

The COVID-19 Research Involvement Group was set up on Facebook to connect patients to researchers, and patients are desperate to be involved. In the absence of local healthcare support, researchers are plugging the gaps for many patients needing someone to show interest in their chronic and continually evolving health needs. 

There are glimmers of hope and best practice. Asthma UK and the British Lung Foundation were quick to act. The Post COVID Hub for all patients experiencing breathing difficulties following COVID-19 connects patients to respiratory specialists by WhatsApp and phone – providing access to specialists in a time-efficient and easily accessible way. However, we cannot leave this support to the charity sector with many charities struggling to survive as a result of the pandemic and having to make critical decisions on their resources. 

Patients are writing the textbooks on COVID-19, yet few have been heard. There is an enormous amount that we can learn through social listening and patient engagement, and we must ask ourselves, are we doing enough to provide the long-term support they need? 

More than ever, we need pharma with expertise in respiratory, cardiology, neurology, rheumatology, nutrition, fertility, mental health, and neuropathic pain to harness its patient-centric values to accelerate access to clinician insights on managing the symptoms of long-COVID.

This crisis has accelerated tremendous innovation in the adoption of new technologies, research, and scientific collaboration. But we need to rewrite the rules on engagement and communication to be mindful of the challenges long-COVID patients face. Reams of written information, cumbersome questionnaires and hours of advisory boards will not fly with patients who are struggling with visual disturbance, cognitive issues, and extreme fatigue. We must act with agility, speed, and efficiency to get the most out of these patient interactions and deliver patient support programmes that are directly accessible to an ever-increasing patient group. 

It is time to start a different dialogue on patient engagement and support. Are you ready to listen and engage? Let’s work together to be the catalysts for change. Let’s amplify patient voices and devise medical education programmes to accelerate understanding.

About the Author

Liz adams

Liz Adams is Head of Peak Performance at The Difference Collective with nearly 20 years of experience in the healthcare industry. Liz is passionate about health and media relations, having worked across a broad range of therapy areas to deliver innovative and engaging communications campaigns. 

 

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Louise Watson

Consumer & Wellbeing Brand Marketing

I have 25 years of consumer and corporate brand-building experience gained working in global network agencies. I am a creative strategist at heart and my client experience across wellbeing, nutrition-marketing and health includes leading award-winning work for Bayer Consumer Health, Kellogg’s, P&G and Unilever. My most recent experience includes 3 years as Chair of Consumer Marketing EMEA at Weber Shandwick where I led the regional client service community and a 12-month contract with Ogilvy leading integrated campaigns.

An impassioned problem-solver, Louise enjoys bringing an audience-centric approach to client issues in order to solve business challenges through strategic communications.

I also lead communication for TEDx Kingston, one of the UK’s largest and most preferred events of its kind.

Elspeth Massey

Charity & Patient Groups

I started my career as a journalist working on the newsdesk of ITV Meridian where I honed by skills as a storyteller. Since then I’ve spent the last ten years leading comms teams in three national health charities, including The Stroke Association, Samaritans and Beating Bowel Cancer. I’ve developed and delivered cut-through campaigns that have driven the profile of organisations, achieved wide-spread media relations coverage and subsequent policy change. I’ve loved getting important causes the attention they deserve.

Alex Harrison

Corporate Communications

I am a healthcare communications specialist with 20 years’ experience working both in-house and for a leading agency and experience developing and delivering successful communication, corporate responsibility and employee engagement strategies. I have a proven track record of providing external and internal communications strategic advice to all levels including CEOs of major corporations and patient groups. I previously worked at GSK in the communications function in various global roles initially as the Financial and Corporate Media Director, and latterly as the Director of Activation for the GSK Save the Children partnership. During this role I was responsible for the internal and external communications strategy and employee engagement campaign for the company’s global partnership.  

Ali Perkins

Leadership Communications

I am is an experienced business and communications leader with over 25 years’ experience in large corporate, small and start up organisations. Key roles have included Global Head of R&D communications for Astra Zeneca, as well as over eight years at Microsoft heading up the UK communications team and as Director of Privacy and Social Media Strategy. 

I have extensive experience of strategic communications, brand and reputation, business planning and restructuring, change management, employee engagement and crisis / issues management. I am comfortable working with and advising the most senior business leaders, often on complex and sensitive issues.

Angie Wiles

Founder & Head of Collectivity

I’ve been passionate about healthcare communications and the ‘difference’ we can make to patients’ lives for over 30 years now. I thrive on collaborative creative working and believe the freedom to choose to work in a way that best suits a person’s lifestyle produces the absolute best results in terms of productivity and creativity. The Difference Collective brings together the best independent senior talented consultants in the business who want to work differently but still benefit from the support and camaraderie of an agency community that has been purpose built to work virtually.

Anna Gray

Prescription PR

I’m a trusted senior PR professional with over 20 years’ experience of healthcare communications. I’ve held senior positions in agencies for over 13 years and have extensive experience of leading brand and therapy area communications, internal and change communications, issues management, patient advocacy and awareness campaigning, patient involvement, content development, stakeholder mapping and development and media relations (traditional and social). My strengths lie in seeing the bigger picture while keeping an eye on the detail and strong relationship skills. I have a real interest in learning and maintaining health and wellness and am currently studying for a post-graduate diploma in Nutritional Therapy with the Institute for Optimum Nutrition in London.

Becky Jones

Medical Education UK/EU

I am a medical communications expert with extensive knowledge and over 25 years’ experience in the Pharmaceutical Industry. I am innovative and skilled at translating scientific and technical language into clear and simple messages for specific healthcare professional audiences and understand the need to incorporate strategic focus and deliver relevant and compelling stories. Delivering projects for the UK Market as well as Europe, Australia and Canada, Becky has worked with healthcare agencies and companies such as Bayer, Eli Lilly, Napp, Gilead, Mundipharma and Novo Nordisk, I have worked across many therapeutic areas, but is passionate about diabetes, cardiovascular disease, and obesity. And as an advocate of expert to expert communications, I am adept at building and establishing trusted partnerships and collaborations and have a strong network of high-profile thought leaders.

Candida Halton

Behavioural Psychology

I am a healthcare communications specialist with 20 years’ experience working both in-house and for a leading agency and experience developing and delivering successful communication, corporate responsibility and employee engagement strategies. I have a proven track record of providing external and internal communications strategic advice to all levels including CEOs of major corporations and patient groups. I previously worked at GSK in the communications function in various global roles initially as the Financial and Corporate Media Director, and latterly as the Director of Activation for the GSK Save the Children partnership. During this role I was responsible for the internal and external communications strategy and employee engagement campaign for the company’s global partnership.  

Charlie Hobson

Copywriting

I’m a marketing professional turned content writer who’s worked with clients in a range of industries including healthcare over the last 20 years. I’m commercial in approach so working on projects with clear outcomes and KPIs really appeals to me. In The Difference Collective, I’m energised by working with different clients and team members who are real experts in their fields, so we spark off each other creatively. I like that projects get moving fast – we’re hands-on quickly, without the pitches and politics.

Charlotte Messer

Consumer Health PR

I have worked in PR for over 25 years, a career that has been varied and exciting.  Having worked in a variety of sectors, healthcare is the area that I am most passionate about and where I feel most proud and pleased to be making a real difference. After working for agencies and in-house I decided that I wanted to have more control over the way I worked. For me, this meant working in an agile way with talented freelancers so I could ensure clients got to work with the very best people, with teams tailored to each project. I was invited to join The Difference Collective this year, which brings exceptional PR professionals together who all share the same ‘brilliance’ ethos. I am proud to be part of such a great team.

Clare Evans

Global Communications

I’ve worked in the biopharmaceutical industry for over 20 years, both in-house and in agencies including leading UK, EU, Global and regional communications teams at Novartis (Switzerland), Roche (Switzerland) and AstraZeneca (UK and U.S.) in areas such as cardiovascular disease, diabetes, manufacturing, supply and quality assurance, neuroscience, and infectious disease. My focus areas are executive and leadership communications, issues and crisis communications, change management, strategy development, and scientific/product data and launch communications. My experience includes leading the Global communications for the 2009 H1N1 pandemic for Roche HQ in Switzerland and managing issues related to the Japan earthquake and tsunami in 2011, from an employee, governmental, manufacturing and product perspective. I am also a qualified pharmacy technician and previously worked in hospital pharmacies in London and Kent ranging from dispensing OTC and prescription medicines to making chemotherapy for patients

Hugh Gosling

Pharma Content & Insight

Having completed a pharmacology degree and journalism post-grad, I have spent 20+ years writing, editing and managing content and editorial projects in healthcare/pharma. I have worked at independent media organizations (notably as Editor of several industry-leading publications), in-house at global pharmaceutical companies, and within creative agencies. I now bring this broad experience to shape content of all types and formats.

In recent months, I have worked on white papers, in-depth reports, patient-focused materials, corporate slide decks and position papers, blogs/articles, technical papers, sales leaflets and HCP training toolkits. I specialise in advising on and delivering high-quality content, with a particular interest in thought-leading content that delivers real value and insight.

Wayne Page

Digital Communications

I served as CEO of one of the most innovative and successful independent digital healthcare agencies in the UK (big pink) for 15 years, leading a team of experts in creating and implementing some of the most impactful global digital healthcare campaigns for some of the biggest brands in the pharmaceutical market. I played a pivotal role in establishing Pfizer’s first EUCAN (EU and Canadian) digital strategy and created and implemented an innovative ‘digital acceleration programme’ to drive rapid uptake of this new approach. For five years, across 22 markets, big pink under my guidance, led the development and execution of Seretide’s global brand strategy (and tactics) as Agency of Record.

Jo Willey

Media Strategy

I’m a storyteller and story creator, passionate about uncovering that killer “line” I know will be irresistible for journalists and their audiences. I have worked as a journalist on national newspapers for 20 years, latterly at the Daily Express where, as Health Editor, I led the newspaper’s health and science coverage which included three or four front pages a week. I have also written for – and continue to write for as a freelance – titles including the Daily Mail, The Times, The Sun, The Mail on Sunday and The Mirror. After leaving the Daily Express in 2014 I set up my successful consultancy Jo Willey Media, and am now a highly sought after communications specialist working with PR agencies, pharmaceutical companies, businesses and charities offering services including media strategy, storytelling and content development, media training and I am an expert facilitator of advisory boards, meetings and workshops.

Jo Williams

Social Media

I am a highly experienced healthcare marketing consultant who has worked in both client-side and agency roles for over 20 years. My knowledge and experience spans the breadth of the marketing discipline but has particular expertise in strategy development and multi-channel marketing. As well as helping to launch and build successful brands for many of the top 10 pharmaceutical companies, I have delivered numerous projects in the areas of corporate reputation, customer experience, insight development, and social media marketing. I worked as a Senior Client Director for one of the largest healthcare insights and consulting agencies, before going freelance in 2017. I am driven by curiosity, a passion for learning and a drive to keep on top of the latest trends in marketing.  

Julie Saunders

Internal Communications & Change Management

I’ve spent over 20 years working in communications functions of pharmaceutical companies and in global healthcare communications consultancies, which has given me a unique perspective on the intricacies of communication across the healthcare environment. Now, as an independent healthcare communications consultant, I focus on communication strategies, stakeholder mapping, leadership counsel, product and corporate communications and internal communication. I am particularly passionate about working with the pharmaceutical industry to make the concept of patient centricity meaningful, and not just a ‘buzzword’! Joining The Difference Collective has given me an amazing connection with a network of very talented and supportive peers, broadening my client offering through collective, efficient expertise.

Lisa Harper

Virtual Working

I’m a healthcare communications consultant with over 15 years of experience. I worked at two highly respected PR agencies for over nine years before taking the plunge and becoming a freelancer. I’ve worked with GSK, Roche, AstraZeneca and Pfizer. The Difference is empowering; it brings us together in a virtual space where we can focus on delivering top-quality work for clients with the support and resources of the wider Difference community. I love the pace and immediacy and enjoy getting up to speed on new therapy areas and assignments in record time.

Liz Adams

Media Relations

With nearly 20 years of healthcare communications and PR experience behind me, I provide detailed insights into the media landscape and client campaigns. I take pride in devising strategies that will breakdown the barriers to patient understanding and empower them to take action when needed. Health matters. Compelling campaigns allow patients to present quicker, access treatment faster, meaning families stay together for longer and lives can be lived. The Difference Collective is a dream team of talent that takes healthcare communications to another level.

Michelle Healy-Thomas

Design

I am passionate about typography and communicating clever ideas through inspired design. Over the last 10 years, I have successfully worked with a broad range of clients encompassing health and life sciences, beauty, energy, telecommunications and the financial sectors. My client experience includes Sony Ericsson, Great Ormond Street, Dresdner bank, Alliance Boots, Liverpool Victoria and Virgin Media. I have won ‘Design Effectiveness’ Awards for my work on Boots Laboratories and Vitol Energy and am a member of the Chartered Society of Designers, sitting on the judging panel for Corporate design. 

Rod Cartwright

Crisis & Issues Management

I am a strategic communication consultant working with agencies and in-house teams to deliver personal communication preparedness and organisation resilience. I bring a 25-year global PR agency pedigree working with market leaders including Ketchum (Global Corporate Practice Director), Text100 (EMEA Regional Director), Hill & Knowlton Strategies (Director) and GCI (Director) to drive lasting reputational growth and business change.

My focus is on issues management & crisis communication; leadership communication & executive preparedness; thought leadership & corporate reputation; and strategic problem-solving & facilitation. I have considerable expertise across ethical healthcare, OTC, consumer health and medical devices and has worked for healthcare clients including Takeda, Roche Diagnostics, Pfizer Consumer Health, Medtronic, Macmillan Cancer Support, Medco, Allergan and the Motor Neurone Disease Association.

Over the course of my career, I have taken on all that global news events such as the disappearance of Malaysia Airlines’ MH370 and the airline’s subsequent sovereign-led restructuring can throw at you.

Stuart Mayell

Creative & Strategy

I’m a Creative Director with 22 years of undimmed curiosity about health and science. I’ve contributed the insights, innovation and ideas that have opened up opportunities for hundreds of businesses. If you need impact, whether with words, brands or strategy, I can help. I’ve led multi-disciplinary teams across design, video, copywriting, digital and development. In my time in the healthcare communications industry I’ve worked across all main medical specialities, however I have particular experience and interest in oncology, medical technology and vaccines. The Difference offers me the perfect platform to advocate for creativity as the answer to many of society’s greatest health challenges; and the tool to help businesses succeed.

Susan Cuozzo

Medical Education Global

I am an award-winning medical education specialist, accredited publication planner (ISMPP CMPP) and medical writer with a 20+ year track record of creating strategic scientific communications. I have led medical writing and editorial teams across therapeutic areas on global and US accounts for agencies based in NYC. I have worked on over 20 drug launches including agents given fast-track designation by the FDA. I am adept at applying adult learning principles to maximize engagements with any HCP audience and have designed and moderated over 100 advisory board meetings and workshops. My passion is working with thought leaders to bring data to life to ultimately improve patient outcomes. In 2017 I was recognised by Pharma Marketers 360 magazine with an ELITE award for Transformational Leadership and by PharmaVOICE as one of the 100 most inspirational people in the life sciences industry.

Vicki Harper

Client Management

I have been in communications and marketing for over 20 years, working with UK and global agencies. I have well-honed client service skills with an insight-first approach that enable me to craft and deliver effective healthcare communications campaigns with a clear strategy and a defined purpose, delivered on time and within budget. I am attuned to the need to add genuine value to my clients and committed to delivering meaningful results that make a difference. In recent years, I have created global digital influencer and partnership programmes supporting women’s health, as well as consumer healthcare brands, enabling them to reach new audiences and online communities alongside PR. I am adept at managing and delivering complex multiple-territory campaigns for large and small-scale organisations, across public, private and the third sector with a background spanning pharmaceutical and healthcare companies, women’s health, healthcare charities, sports & wellbeing brands and social enterprise.

Louise Watson

Consumer & Wellbeing Brand Marketing

I have 25 years of consumer and corporate brand-building experience gained working in global network agencies. I am a creative strategist at heart and my client experience across wellbeing, nutrition-marketing and health includes leading award-winning work for Bayer Consumer Health, Kellogg’s, P&G and Unilever. My most recent experience includes 3 years as Chair of Consumer Marketing EMEA at Weber Shandwick where I led the regional client service community and a 12-month contract with Ogilvy leading integrated campaigns.

An impassioned problem-solver, Louise enjoys bringing an audience-centric approach to client issues in order to solve business challenges through strategic communications.

I also lead communication for TEDx Kingston, one of the UK’s largest and most preferred events of its kind.