A patient engagement authority reflects on the impact of pharma’s response to COVID-19 and outlines hope for a better perception of the sector as providers of health solutions beyond the pill.
Since the first awareness of COVID-19 in the medical press and alert to the World Health Organization on December 31 2019, global health agencies and organisations have been in a cooperative and cathartic collision of communications.
In just 12 weeks we have contributed to sharing science, solutions and stories about a micro-invader that has forever altered both how we report research and how we relate to one another. The medical and ethical repercussions from the worldwide response to the COVID-19 pandemic are such that there will be no return to ‘normal.’ The disruption in how the pharmaceutical industry is perceived and in the patient–physician–pharma dynamic, are both now completely different. This is the change in mindset that has been desperately needed and will pave the way for healthier and more productive relationships underpinned by better communications that are already evident.
What then does COVID mean for the future of pharma–patient engagement and health literacy/communications? It can be summarised as follows:
• Care – as the primary ‘efficacy’ measure for any new medicine or therapy.
• Openness – transparency and collaboration in research and publishing.
• Veracity – industry has a global cadre of experts with habitual truthfulness.
• Infodemiology – no more excuses for avoiding the social health channels.
• Dependency – the pendulum for trust has swung back towards pharma/experts.
For decades pharma has been providing ‘beyond the pill’ health solutions in ‘patient support programmes’ (PSPs) as well as disease awareness campaigns. Sceptics have dismissed this as ‘disease mongering’ but there is no doubt that helping people to make lifestyle changes to assist with adherence to pharmacotherapy, participation in clinical trials and the sharing of health success stories and support of patient groups is a part of ‘integrated health solutions.’ PSPs have proven economic ROI with one study describing a 35% reduction in disease-related medical costs (Brixner 2019) and all-cause medical costs by providing a PSP. Patient engagement programmes are starting to demonstrate similar healthcare savings (Levitan’s 2015 study showed a 500:1 ROE for patient engagement programmes).
Collaborative care is evidently a critical component therefore to assist with early management of the COVID-19 pandemic while the production of a diagnostic test, antiviral therapies and a vaccine are in development. Within weeks companies like Novartis announced the provision of millions of ‘free’ doses of the antimalarial medication hydroxychloroquine as the only possible pharmacotherapy available for immediate use for patients. Mighty collaborations were formed with drug giants such as GSK and Sanofi to develop vaccines, and GSK and AZ to develop testing kits. CEO Emma Walmsley assured people that the company would not show any net profit from vaccine sales and that along with future research investment, GSK would use any profits to subsidise vaccine deliveries to developing countries. This is a public commitment to care using expertise that was arguably, to be expected given the profits pharma receives for management of human health. However, on a smaller scale, patient engagement experts from within pharma walls were reaching out to all the groups and charities they work with and offering help through additional lifestyle support measures and information. Furthermore, pharma has focused communications and scientific expertise into impressive public health initiatives and disseminated valuable information through all possible digital channels to ameliorate fears and myths about COVID-19. In non-emergency therapeutic areas, patient engagement programmes are already perceived as an adjuvant therapy (Hermans 2016), and pharma support of online patient communities and story-sharing for health management are now ‘prescribed’ as part of integrated care plans. Acknowledging that pharma contributes to such broader public health management initiatives and that meaningful patient engagement delivers better health outcomes (EFPIA 2020) is part of the next positive change – openness.
For too long, publishing medical information through medical journals has been expensive and laboured under a long and lofty peer-review process. The requirement for real-time, rapid sharing of data, knowledge and response to the COVID-19 threat has seen open-access publication platforms from scientific publishers such as Nature and the Academic Data Science Alliance. The ‘Living Papers’ project (Ku Leuven 2020) where structured compilations of scientific data about COVID-19 include data about the virus, the disease and its control are updated daily to stimulate transdisciplinary initiatives.
The genie is out of the ‘paywall’ bottle around free downloads of scientific papers and expedited peer-review process which is in parallel to regulatory authorities promising fast review of tests and treatments. Such openness is the hallmark of change and a return to archetyping pharma companies as competitive, secretive and unwilling to share health data will become moot in concert with openness through scientific publishers and regulators.
For the general public with a usual low-level appreciation of complex medical data, the repeated media exposure to the COVID-19 crisis can cause anxiety. The emergence of myths and conspiracy theories compounds this and lack of understanding of the drug development process can lead to frustration and increase fear where people may ‘take matters into their own hands’ and follow unproven and dangerous health advice that is not verified by trusted medical sources. From people ingesting toxic cleaning fluids through to ‘Headline Headache’ and behavioural responses such as rushing to stockpile goods; poor-quality and scaremongering health information induces a a heightened stress response and misplaced behaviours.
Goncalves (2020) described this as ‘human bias’ that needs to be accounted for where it is better to absorb overwhelming health information from medical leaders such as Dr Anthony Fauci. This is the time to put political point scoring aside and allow the experts to take centre-stage.
Accordingly, it is clear that simple, socially acceptable, short guidelines for health-protective behaviours are as much an important aspect of health management responses to COVID-19 disease prevention and recovery as medicines. The veracity of facts, accuracy and communication of digestible public health information is key to manage ‘pandemonium’ on a global scale. What is also intriguing is the ensuing change from ‘patient generated data’ and ‘real world data’ harnessed through wearable devices and the social channels. Pharma regulators in particular have often questioned the reliability and reproducibility of data from anything other than traditional clinical trials; we can no longer dismiss the diagnostic and data signals emerging from the digital channels, however.
The study by Qun et al. (2020) used social-media search indices (SMSI) to highlight that early symptoms of COVID-19 recorded on social channels provide an average ‘meteorological health alert’ of outbreak and early diagnosis 6–9 days earlier than new and suspected COVID-19 infection. As an effective early predictor, SMSI gives scope for sensible allocation of health resources and public health campaigns. However, despite the huge increase in people seeking information on the internet pertaining to COVID-19, Cuan-Baltazar et al. (2020) reviewed 110 popular websites and found an outpouring of misinformation of COVID-19 – the quality of the information was dire (only 1.8% and 10% of websites attained standard accuracy benchmarks used routinely in the HONcode seal and JAMA quality criteria respectively).
As the Internet is such an important source of health information for non-scientists, responsibility for the quality of information available must be assumed by the experts; otherwise misinformation becomes a risk to health. Pharma has an ethical imperative to play a key role in the most important communication science for the public – health literacy and infodemiology.
The first five months coming-to-terms with the impact of COVID-19 has seen over-use of the term ‘unprecedented’ and has turned millions of us into healthcare professionals, medical communicators, epidemiologists, social workers, home workers and, fearfully, potential patients.
The COVID-19 pandemic has forced us to look at the Venn Overlap Space where patient engagement and medical education cross into public health. This is predominantly practised via the social media channels and pharma can no longer legitimately refuse to participate as it is an important provider of health information that is accurate and helpful. A communications crisis follows in the wake of the wave of the infection and in the absence of strong, supportive,trustworthy communications fear, anxiety and mis-information fill the void. The social media term of ‘going viral’ is prevalent when it comes to spreading bad news.
Early studies of use of social media as part of health management of COVID-19 is yielding insightful opportunities to elevate the status of social media from ‘chit chat’ to a research, diagnostic and public health tool and therapy of merit. Abt-Alrazaq et al. (2020) used sentiment analytics to review approximately 2.8 million tweets related to COVID-19, identifying four topic themes from which communication responses and advice could be created: (i) origin of the virus, (ii) its sources, (iii) its impact on people, countries, and the economy, and (iv) ways of mitigating the risk of infection. Health systems also can integrate data from social channel monitoring to assist with disease detection and surveillance systems. Basch et al. (2020) analysed the 100 most viewed YouTube videos to ascertain if preventive behaviours to mitigate transmission of COVID-19 were projected; despite collective views of over 125 million, fewer than one-third of the videos covered any of the seven prevention behaviours listed by the US Centers for Disease Control and Prevention (CDC 2020), which is clearly a gargantuan missed opportunity for disease prevention.
This is why the social channels, online patient communities and social health campaigns will become an inevitable change following COVID-19 lessons in health crisis management as part of a standard communication and health literacy aspect of pharma–patient engagement. We’ve witnessed profound improvements in the development of treatments and the provision of care beyond pharmacotherapies as a result of online communities and hearing the voice of the patient in pharmaceutical research and development. We have also vastly improved how we communicate about medical science and the ‘experts’ have benefitted from how social channels have helped not hindered. Yes, there are aspects of social health sharing that can be frustrating, but just as the ‘ice bucket challenge’ of 2014 was remarkable for raising awareness and research monies among the public about amyotrophic lateral sclerosis, so too can the social channels and online communities really enable and expedite good public health messages and ‘wraparound’ social care that helps people get through the COVID-19 crisis one ‘isolated’ day at a time.
For decades there has been a ‘pantomime villain’ label tagged onto big pharma as only interested in profits over people. Mainstream media persistently reinforces this archetype, and this is compounded by a poor health literacy surrounding the parameters and regulations of drug research and development. To a certain extent, the trepidation of pharma to competently engage with patients in social channels and reluctance to be more overt in its relationships with patient organisations has not helped to ameliorate the criticism of its motives.
However, the onslaught from COVID-19 has left society, health organisations and pharma’s loudest critics with no choice than to seek to trust that pharma can be relied upon to collaborate to create treatments, vaccines and provide supportive care. Accordingly, media outlets and pharma’s own corporate communications departments have adapted to deliver the ‘dependency’ message that patients desperately need to believe in. Not only have impressive collaborations been orchestrated, but strong communications have been made to reassure people that pharma is diligently working to get treatments to patients.
There are at least 11 companies with therapies and vaccines in development; the COVID-19 structure was decoded in days, antiviral drugs have been re-purposed and vaccines have gone into testing at unprecedented rates of development. The very clear message is that you can depend on pharma to deliver.
As we start to come through this medical crisis, I hope there will be a catharsis that, to all of us likely to be touched by this pandemic, that will lead to great change. How we carry out clinical trials, how we respond as a society to a public health crisis, how we relate to patients will change. How we perceive the pharmaceutical industry must change so that society sees it as providing healthcare solutions beyond the pill. I am optimistic that future medical writers will reflect and that ‘the COVID-19 2020 crisis’ will be the case study that demonstrated just how much research collaboration can deliver. We are in this for the long haul and leading with good communications and exemplary patient engagement, not misleading with sensationalism, matters.
- The COVID-19 crisis is a chance to change the image of the pharma industry as that one that is transparent.
- The crisis has disrupted the patient–physician–pharma dynamic.
- COVID-19 has highlighted the power of viral misinformation to the non-medical public.
- The spread of the disease has presented an opportunity for cross-collaboration which we must not forget once the crisis is over.