Jenny Ousbey outlines the patient experience and developments in advocacy

Being a patient in 2020 has been worrying, frustrating, isolating, uplifting, tiring, relentless….and all the other adjectives in between. This shouldn’t come as a surprise to you, of course. Patients are people first. So, it’s no wonder their experiences cover the spectrum of emotions we’ve all experienced this year.

However, it’s clear anyone looking at 2020 from a patient’s view will have cause for concern over the impact of COVID-19 going forward. Just as the pandemic has exposed the deep fault lines of health and social inequalities in the UK, other differences in experience have been revealed in 2020.

Adversity is often the mother of invention. Some patients have received great care and treatment virtually or via digital apps which have empowered them to manage their condition. In fear of (or prompted by) the risk factors for COVID-19, across the UK people have seized upon 2020 as the year they quit smoking, cut down their drinking or lost weight.

Despite these positives, we can’t ignore the damage caused. Many patients have felt isolated and left behind, unable to attend their usual appointments and adrift from their usual support network. The 50,000 who have missed a cancer diagnosis due to COVID has been tragically well-documented, and this is the cold tip of a very large iceberg.

There’s no wonder, therefore, that in the past ten months patients and people have sought out the power of connection. Across conditions and beyond borders, we’ve found solace in each other and drawn strength from this shared experience which, cliché or no, is truly unprecedented in our lifetimes.

Developments in patient advocacy

The emerging ‘Long COVID’ patient advocacy movement has seen huge amounts of activity on forums and across social media channels. It’s also been a powerful force for additional investment in treatment services in the UK and abroad. As the founder of a US-based group, Fiona Lowenstein told Forbes how patients want to connect because they are seeking: ‘someone who could understand the intense anxiety that comes with thinking you might have Covid. But they also had really tangible questions. They wanted to know, how did you know to go to the hospital? What was it like? What did the nasal swab feel like?’.

All very familiar questions which those of us in health will recognise. Particularly to those teams working in UK health charities whose helplines, webpages and educational resources have played an absolutely critical and vital role during the pandemic. Patient groups across the spectrum have ramped up their resources, despite facing unprecedented financial challenges, to support their communities. Some have also received support to do this from pharmaceutical companies – an example of effective partnerships born out of necessity, adversity and genuine need.

At OVID Health, we created the Patient Partnership Index before the pandemic began. We wanted to support and inspire pharmaceutical companies and patient organisations to partner together to deliver meaningful and powerful change for patients.

The Patient Partnership Index – a first-of-its-kind benchmark for the industry developed by OVID with PharmaTimes – aimed to share best practice and raise the bar. After much agonising, we came to strongly believe 2020 was still the year to unveil the Index – it was more vital than ever to celebrate positive partnerships between patient organisations and the life sciences sector.

Launched in May, the Index offered pharmaceutical and biotech companies an opportunity to showcase and evaluate the quality of their communications and advocacy with patient groups. The Index evaluated the highest standards of partnerships in communications and advocacy between pharmaceutical, biotech and patient communities based on a bespoke metric created by OVID.

The power of emotional resonance

2020 has shown more clearly than ever that you cannot always tackle facts with facts. It’s also demonstrated how emotion holds more sway with policymakers and decision makers than cold hard data. This development matters in patient advocacy because it demonstrates more acutely than ever that patient stories carry weight.

That’s why that trip to Barnard Castle by Dominic Cummings hit home. And you’ll have seen it in Marcus Rashford’s incredibly effective campaign on child food poverty which resulted in the Government eventually agreeing to pledge £170 milllion to support families via a winter grant scheme. Emotional stories carry power as much as facts and data, particularly when people are being subjected to a tsunami of facts.

All of this doesn’t negate the need for science and data though. Never has that been more apparent this year than in the patient/people advocacy required by politicians, policymakers, industry and others to deliver effective public health messaging on vaccines.

Why is emotional resonance important? As OVID Health’s senior counsel on vaccines, Professor David Salisbury, recently made clear, with less than 10% of the population showing evidence of having been infected, targeted vaccination will not allow ‘life as previously usual’ to return. He said: ‘The challenge will be persuading the young, for example, to be vaccinated, not for their own benefit, but for the benefit of others.’

The problem of vaccine confidence is complex. The under 55s are the most likely to be ‘spreading’ infections, yet polling by OVID Health and Deltapoll in November shows this group need the most persuading to take a COVID-19 vaccine. One in four are unlikely to want to be vaccinated.

Age was by far the biggest driver in who would accept a vaccine, with 75% of those least likely to want a vaccination being under 55. Amongst our respondents, those least likely to say they will take a vaccine were twice as likely to be Millennials as opposed to Baby Boomers.

They are not ‘anti-vaxxers’. But they don’t see the personal benefit of getting vaccinated. This should scare Matt Hancock and his team at DHSC. Especially when leaked plans revealed in HSJ last month set an ambitious goal to vaccinate every adult who wants to be by April. This target comes with provisos (not least supply chain), but it will be moot if uptake is lower than the 75% the plan hinges upon.

A ‘get out the vote’ style campaign will therefore be crucial if the country wants to return to something like normal in 2021. Patients and people will have to be partners in this effort. The hesitant will need more than to understand why they should take part. They will need to feel the reason. Truly co-created content with powerful stories will be what will persuades them – not data.

Where to now?

Parents’ stories have become one of the most powerful tools in access to medicines and vaccines campaigns. Medicinal cannabis, cystic fibrosis and meningitis B are pertinent recent examples. 2020 has brought this movement into even sharper focus.

The evidence is clear – amplifying patient voice is more than achieving ephemeral media coverage. It can be significant leverage for political interest and action. In OVID’s experience, a frustrating lack of response from senior officials can be unblocked within hours of an appearance on BBC Radio Four’s Today programme.

As we herald in 2021, the power of patient communities in delivering advocacy and communications programmes should not be underestimated. This year, out of our primal human desire for connection, we’ve seen – despite everything – how much transformation and change for good can be achieved.

Jenny Ousbey is managing director at OVID Health. For more information on the Patient Partnership Index, visit