New study reveals patients’ changing needs during COVID-19

New research from The Patients Association, supported through sponsorship provided by Novo Nordisk and ENGINE MHP, looks at how more than 950 patients experienced the COVID-19 pandemic, with an emphasis on managing and accessing care and their experiences of treatment and services more broadly.

Here, Patients Association CEO Rachel Power and ENGINE MHP director Jonathon Sheppard explore some of the findings – such as major disruptions to the relationships between patients and the health and care system – and what these insights could mean for an industry looking to respond to the global pandemic and to best support the patients they are here to serve.

Managing and accessing care for existing health conditions

A striking 67% of respondents had health and care appointments cancelled as a result of the pandemic, with GP appointments, dentistry and diagnostic services particularly hard to access. Some 47% had actively chosen to put off accessing services and support entirely, with reluctance stemming from wanting to avoid either possible exposure to the virus or adding to healthcare professional workloads, especially in primary care.

In responding to COVID-19 much has been written about the potential of new, virtual and innovative ways of working in terms of delivering and monitoring care, but also supporting patient-healthcare professional engagement. While such rhetoric has continued to pick up pace, more than 200 respondents to the survey said they had not used remote consultation services at all, with a number of respondents wanting a swift return to face-to-face appointments sooner rather than later.

A number of patients, however, noted the benefits of remote consultation, particularly in more geographically remote areas or where access is preferred at pace. There was a general willingness among many to engage with online and telephone consultations on a more regular basis.

“The pandemic has highlighted the… difficulties in communicating with patients,” one respondent said. “A quick way to improve this would be to move to ‘digital by default’ for communication with patients (only for those who are comfortable using digital) because it is quicker, easier and cheaper.”

Of course, a balance must be struck. A ‘one size fits all’ approach will not work, and patient choice and preference needs to be front and centre, with services that work for the patient.

Recently, industry has invested in ‘beyond the pill’ services and digital or tech solutions to problems around system capacity or patient demand and engagement. The COVID-19 pandemic has certainly seen continued investment as organisations increasingly position themselves as ‘healthcare companies’, evolving beyond being solely developers and manufacturers of treatments and therapies.

There can be a nervousness among patients of ‘transformational’ services across the NHS; perhaps as a means to replace traditional face-to-face appointments. In response, industry needs to focus efforts on building confidence in the applicability and use of such services. This includes ensuring patients are involved throughout the entire process, from development and implementation through to evaluation and review.

This concept of ‘digital healthcare literacy’ will only become more prominent in the years to come.

Community and peer support

As a result of the social distancing measures imposed during the pandemic, some patients started taking to online peer or community services, in some instances in lieu of face-to-face support.

More than 100 respondents said they used ‘Facebook groups or other online forums’ to gather support or get particular information.

The research included a number of case studies from respondents where local communities responding to the pandemic have increasingly provided online support tools, with one particular example being a “peer support group for people with long term health conditions through the local MS centre”.

Community support moving online, a trend seen across patient and patient group communities in recent years, has certainly been accelerated by the pandemic, with one respondent noting “being able to connect easily with people who have had a similar condition to share ideas, experience and do fun activities with has been a huge help”.

Industry may want to consider acting as a facilitator for peer-to-peer support, with companies endeavouring to better understand how they can enhance or build out digital and virtual platforms to bring together and condition communities in the sharing of hints, tips and best practice. Ultimately, the collective role of industry is in asking people what matters most to them, and reflecting on what they can do to best serve and support patients in response. Part of this may be the facilitation of peer and community support, shifting such services away from the centre of the system.

Needs and concerns for the future

A majority (59%) of respondents said they were worried their current condition(s) might get worse as a result of lockdown and other adopted policies during the pandemic; 70% were also worried the services they need will ultimately become harder to access after the pandemic. Concerns about the joining up of patients’ health records was also articulated.

“Computer systems need to be linked so hospitals can access GP records and vice versa,” said one respondent. “I was being fast tracked for head and neck cancer and six months later I have not had my MRI scan – so make this sort of thing a priority”

While this may not be a new issue, the pandemic has brought new light to long-known challenges around data and record sharing inefficiencies across the NHS. More so than ever before, these inefficiencies will impact the ability to deliver care and support at pace in an already squeezed healthcare system with opportunities for industry to consider their ‘value-add’ in the provision of digital infrastructure support aligned to their medicines. We know in public health for example the joining up and stratification of disease risk factors supports the earlier identification and treatment of patients.

Part of the equation here also remains trust however, and involving patients from the outset is key, ensuring their input and point of view is captured, listened to and acted upon.

Overall experience of support and services curing the pandemic

Over half (53%) of respondents said they did not feel that their health and care needs had been supported overall during the pandemic. Delving into this further, respondents were invited to ‘agree’ or ‘disagree’ with a number of statements in relation to their care, such as “My care has been well co-ordinated” and “I have been able to access the service I need”.

Less than half of respondents (49%) said they agreed ‘most’ or ‘all of the time’ that they had been able to access the right information to help them care for themselves. Just over half (51%) also disagreed ‘most’ or ‘all of the time’ that they had been supported emotionally during the pandemic and as part of their own care package.

In addition to the immediate treatment of their respective condition, we have also increasingly seen during the pandemic an acknowledgement of individual mental wellbeing as a priority and area of concern for patients. Industry needs to recognise the need for holistic patient support and consider what they can bring forward in terms of resources or platforms to make a real difference to individuals’ mental wellbeing.

A patient-first restart

The COVID-19 pandemic has been an incredibly challenging time for patients.

There have been some green shoots and pockets of best practice in response, in particular the sense of community spirit and unity fostered within online communities – and indeed offline, through the likes of telephone support and leaflet dropping – and the rise of remote or virtual consultations and digital tools to help manage capacity and maintain patient contact.

However, prominent challenges persist, with an emphasis on the need for mental health services and wellbeing support, and concerns around system infrastructure and capacity returning to ‘normal’ levels, and the impact this has on patient experience and outcomes.

The crisis is not yet over, and will likely continue for some time to come. There is a need and expectation on everyone within the healthcare ecosystem to play their part in driving and establishing new norms and ways of working.

In this, the ‘NHS restart’ must be centred around the problems experienced by and needs of the patients, as opposed to a ‘system first’ approach. And industry has a role to play in making this a reality.

Read the full report here.

About the authors

Rachel Power is the chief executive of The Patients Association. Jonathon Sheppard is a director within the Health practice of ENGINE MHP.