A recent survey of over 1,700 patient groups around the world has revealed the true toll the Covid-19 pandemic has had on patient communities, with many individuals feeling more vulnerable, confused and uncertain about the consistency and continuity of their care.1
Soaring demand for charitable patient services, coupled with a staggering shortfall in patient group income, has created the perfect storm. With shops closed, fundraising events cancelled and additional pots of funding restricted, patient groups are being left with little choice but to cut back on the much-needed support they provide.
A study conducted last summer amongst members of a neurological charity coalition in the United Kingdom anticipated there would be approximately a 30% reduction in provision of patient services amongst its members, including local support activities, clinical care training and peer support groups.2 What's more, the Association of Medical Research Charities (AMRC), one of the leading funders of clinical trials in the UK, anticipates losing more than a quarter of its income this academic year.3 This puts much needed trials in jeopardy.
Now, more than ever, the life sciences industry has a responsibility to listen to the unique and changing needs of patients. We must continue to work with patient organisations on their vital work to safeguard continued access to treatment and to understand their need for holistic support ‘beyond the pill’.
Throughout the pandemic, we at Pfizer have continued to partner with patient organisations across a broad spectrum of conditions from cancer to rare diseases, ensuring patients feel equipped, informed and empowered despite the uncertainty.
At the start of the first national lockdown in March last year, it was apparent that patients across the country would be among the worst impacted by both the effects of the virus and our efforts as a society to protect those most vulnerable to it from harm. And like the patients they represent, it became clear that patient groups across the spectrum of disease areas they work in would also be significantly impacted by the pandemic – early estimates claim that UK charities will collectively lose approximately £6.4bn of income.4
Following numerous conversations with patient group representatives, we worked at pace to develop a ‘COVID relief fund’. Whilst by no means a solution to the problem at hand, our aim was to offer some relief for those organisations providing irreplaceable support to patients in the community. In some cases, our intervention helped organisations to exchange in-person meetings for digital meetings, ensuring patients continued to be able to access often much needed advice and emotional support.
Working with patient organisations gives us the best opportunity to do this in a safe, compliant manner. Building relationships and spending time with them helps us to deliver new treatments and establish programmes that provide breakthroughs for patients and their families.
With the emergence of new innovative medicines, we increasingly rely on patient interaction at every step of the development pathway – from clinical trials through to post launch pathway development.
A good example of this is our work to involve patients in the design of our clinical trials. At Pfizer, we believe it is important that the patient community feels like a true partner - a co-creator – given they will be the end ‘user’ of any treatment or therapy should it reach the market.
As I illustrated at an ABPI event in June 2019: “A tech company would never research their next smart phone without actually talking to the people who are going to be using it. So why should we be any different?”5
Our recently commended collaboration with the National Institute of Health Research (NIHR) patient ambassador group really demonstrates this in practice.6 Reflecting on a meeting that comes to mind, my colleagues worked with the NIHR to facilitate a discussion with a group of patients with a chronic autoimmune condition called ulcerative colitis. During the workshop, patients were given an opportunity to share their experiences of living with the condition and were consulted on various parameters and the personal impact of an upcoming clinical trial.
As one of the participants remarked in a blog post after the event, “I think the Pfizer team learned a lot from us. That’s the great thing about having a conversation as opposed to filling out a form.” 7
This is exactly the type of active listening and engagement we value and will continue to prioritise on our journey to put patients first in all we do.
- Patient View. The perspectives of 1,720 patient groups during the Covid-19 pandemic. Sept 2020.
- The Neurological Alliance. The impact of COVID-19 on the health and care voluntary sector. Accessed Nov 2021.
- The Lancet. More support needed for UK charity-funded medical research. Nov 2020.
- Hanover. Covid-19: Impact on UK Patient Groups. June 2020.
- Pharmaphorum. Making Patient Involvement Meaningful. July 2019.
- Reuters Events. Pharma Awards Europe 2021 EU finalists. Accessed Nov 2021.
- NIHR. Creating conversations: Connecting life sciences companies and patients to improve research. Aug 2020.
PP-PFE-GBR-4210 / November 2021