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Patient Group Experiences of the COVID-19 Pandemic: 1,720 Respondent Patient Groups

Research and Markets
·4-min read

Dublin, Nov. 06, 2020 (GLOBE NEWSWIRE) -- The "Patient Group Experiences of the Covid 2020 Pandemic: The Views of 1,720 Patient Groups" report has been added to's offering.

Many surveys have been undertaken during 2020 to learn about the Covid-related experiences of patients. By contrast, few surveys have focused on patient organisations' experiences during Covid-19 the subject of this 2020 survey.

The perspectives of 1,720 patient groups during the Covid-19 pandemic.

  • Survey conducted July to August 2020.

  • Survey questionnaire in 20 languages.

  • 1,720 respondent patient groups.

  • Analysis of results for 27 countries.

  • Analysis for 27 therapy areas.

The main topics covered by the questionnaire

Patient-group perceptions of how the Covid pandemic has affected: Patients. Pharmaceutical-company activities. Patient organisations themselves. In addition, the survey asked the 1,720 respondent patient groups to assess the effectiveness of their country's government in tackling the Covid-19 outbreak.

Why Survey Patient Groups?

Patient groups are perhaps the only healthcare stakeholder to interact across every aspect of the healthcare system: from regulators, physicians, healthcare providers, and healthcare payers, to patients. As experts in the field of patient needs, patient groups are uniquely positioned to have a 360-degree perspective on patients' lives, on patient care, and, in particular, on the care supplied to patients by the local healthcare system. So, when respondent patient groups offer the survey their perspectives, these opinions are drawn from a patient, not from a public, perspective.

The Impact of COVID on Patients

The survey aggregates what patient organisations have learned about how various communities of patients are coping during the pandemic - patients with different medical conditions, in different countries. Judging by the feedback and commentaries from respondent patient groups, fear is a dominant theme among patients. The survey results show that patients living in the community are being sidelined - even abandoned - by their healthcare systems during the Covid pandemic. Patients feel both vulnerable and confused, uncertain about whether they will continue receiving care during the pandemic - not only of medical treatment but of all the other services required for continued health. These isolated patients worry about:

Personal safety:

% of respondent patient groups saying that personal safety is a major concern for patients during Covid:

  • 79% of the 1,720 respondent patient groups.

  • 95% of the respondent multiple-sclerosis patient groups.

  • 90% of patient groups from Ireland.

  • And...90% of patient groups from Germany.

Access to continued treatment and care. % of respondent patient groups saying that being able to access treatment and care is a major concern for patients during Covid:

  • 70% of the 1,720 respondent patient groups.

  • 93% of multiple-sclerosis patient groups.

  • 90% of lupus patient groups.

  • 62% of patient groups from Hong Kong. And...

  • 48% of patient groups from Greece.

Patient Groups' Response to the Pandemic

Patient groups have become a major lifeline for chronically-ill patients living in the community. Deprived of customary forms of care and support from their healthcare systems during the pandemic, patients are turning to patient groups for help. Over half (52%) of the survey's 1,720 respondent patient groups report having more contact with patients since the onset of the pandemic.

The survey also finds that the vast majority of patient groups have embraced new responsibilities as they work to protect and maintain services for patient communities in the year of Covid. So, during the pandemic ...

  • 77% of the survey's 1,720 respondent patient groups have taken steps to define the needs of patients known to them.

  • 67% are hosting telephone helplines.

  • 57% are bringing patients/carers together online for peer-to-peer support.

  • 49% are offering medical advice.

  • 26% are supplying personal protective equipment (PPE). And...

  • 23% are delivering treatment and care.

The Implications for the Future

Patient groups (rather than healthcare systems) have become the first port of call during the pandemic for many chronically-ill patients - a trend that is reinforcing the reputation of patient groups among the public. In addition, the new networking connections being created among patient groups during the Covid period have the potential to strengthen these groups' future position, potency, and leverage within their countries' healthcare systems. And patients groups can, today, say with certainty that they have a pivotal role in healthcare.

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