Are rapid progress and patient engagement mutually exclusive?

COVID-19 has sparked a flurry of research and discoveries that are being made at an unprecedented rate – but patient engagement cannot and should not be left behind in the rush.

SARS-CoV-2 has demonstrated both the strengths and the weaknesses of the life sciences ecosystem, and it is now up to the sector to learn and to lead.

While trials of COVID-19 vaccines and treatments have accelerated at a hitherto unimaginable rate, work in other conditions has been halted and paused, both of which could hinder future progress, said Aisling Burnand, chief executive of the Association of Medical Research Charities (AMRC).

“In a race of frantic, unprecedented change with challenges none of us have faced before, patient and public engagement have felt pushed aside.”

“Research has stopped, and what has gone ahead has felt rushed, with little listening,” she said during the first session of this year’s Pioneering Partnerships conference, organized by the Association of the British Pharmaceutical Industry (ABPI), the National Institute for Health Research (NIHR), and the AMRC.

“One of the consequences of the system commissioning lots of urgent COVID-19 research was that, to a certain extent, patient and public involvement got bypassed. For various reasons, it was too difficult or time-consuming to do when everybody was in a frightful rush”

Halting progress

In April, 73% of clinical trials were stopped, and, as of early October, more than 40% were still on hold.

Aisling said we were “unlikely” to reach pre-COVID levels of non-SARS-CoV-2 clinical research before August 2021, even without the looming second wave. It means that without a cross-sector plan to get trials back up a running, a decade of research could be lost to the COVID-19 crisis.

Baroness Nicola Blackwood, Conservative MP and chair of Genomics England agreed and said that unlocking what we have learned from research during the pandemic so far would help move the NHS from a “sick care service to healthcare service.

“COVID-19 has transformed the way clinical trials are run. Our research ecosystem responded to the crisis with a pace and effectiveness that few other nations were able to match,” said Baroness Blackwood.

“UK researchers sourced streamlined regulatory processes, had better communication with patients and clinicians, and we saw some much more sensible approaches to risk. This sped up the development of new COVID treatments, without sacrificing safety.”

Weaknesses

But the crisis also brought some of the system’s weaknesses into sharp focus, said NIHR director Jeremy Taylor.

“One of the consequences of the system commissioning lots of urgent COVID-19 research was that, to a certain extent, patient and public involvement got bypassed. For various reasons it was too difficult or time-consuming to do when everybody was in a frightful rush,” he said.

“Patient engagement and public involvement turned out to be less embedded than we thought, so I think COVID has been a bit of a shock to the system. It’s made us think that maybe we have been a little bit too complacent.”

The virus, which has disproportionally affected people from Black, Asian and minatory ethnic (BAME) communities had also highlighted a lack of diverse voices, and the urgent need to address clinical trial representation and health inequalities, he said.

“We need more BAME voices around the table. We need younger people, and we need people from excluded communities.”

Regardless of what the health system is faced with, Dr. Richard Torbett, chief executive of the ABPI, said that “we can’t ignore our collective responsibility to make sure we conduct ethical research”.

“We need to continue advocating the importance of having the patient voice right at the heart of everything that we do.”

Building on the positives

Aisling said we needed to build upon the positives, pointing to the increased public awareness around the process, language, and importance of clinical research.

More people have volunteered for trials than ever before and thousands are monitoring their health on a daily basis.

The sector must seize this opportunity to build back better and stronger, the speakers agreed.

Said Baroness Blackwood: “We need to look honestly at the areas where the crisis has brought sharp relief, and what needs to be improved.

“If we don’t take this chance, we risk losing what is a golden moment to make our clinical research landscape fit for the next generation.”

It was a sentiment echoed by Dr. Torbett, who said the UK government needed to take “urgent action” to develop a sustainable, safe, restart plan for non-COVID clinical research.

“Patient engagement in research is essential. That needs to be a principle that carries right the way through this,” he said.

“I really feel that we’ve got ahead of steam right now with multiple stakeholders, particularly in this country, who really understand the value of medical research. We have a genuine opportunity to lead here.”

References/Based on this article.

Tags: medical communications, patient engagement, medcommms, patient eccentricity, medical meetings, virtual meetings

RECENT POSTS

Exploring the Intersection of HCP Engagement and Patient Centricity in the Pharmaceutical Industry

The pharmaceutical industry has always acknowledged the significance of engaging with healthcare professionals (HCPs) and patients. However, the fusion of HCP engagement with patient centricity unveils a new…

Transforming Medical Affairs Through Innovative Technologies

Medical Affairs has evolved into a strategic function in the biopharmaceutical industry, with a focus on Evidence, Engagement, and Education.…

Maximizing the Impact of Medical Affairs in Pharma: A Strategic Imperative

Physicians are navigating an unprecedented level of clinical complexity today, characterized by more specific indications, a growing number of clinical…

Optimizing Scientific Content for Improved HCP Engagement

Optimizing Scientific Content for Improved HCP Engagement: A Guide for Medical Affairs Teams Pharmaceutical organizations are seeking more effective ways…

HCP Digital Engagement: Trends and Effective Strategies for Medical Affairs Pharma Teams.  
Data-driven insights and an optimized orchestration of content delivery and channels are essential for Pharma to expand their relationships with modern HCPs.
0+

YEARS IN

MARKET

0+

THERAPY

AREAS

WORK IN

0+

COUNTRIES


GET IN TOUCH

Whether you’re looking for effective solutions to transition F2F meetings to a virtual or online environment, support with clinical trials, medical advisory boards, symposia, key opinion leader (KOL) management, internal medical training, medical writing or speaker training programs and more, count on our 16-year experience and expertise over 40 therapeutic areas.

SDM also offers strategic consulting services and can help with communication and engagement of your target audiences as part of market development opportunities.

Discover why over 95% of clients are “Extremely Satisfied” with SDM and over 90% say the agency deliver “Much more than expected”.