Patient Group Experiences of the Covid 2020 Pandemic: The Views of 1,720 Patient Groups consists of three reports as follows:
- Overall results from 1,720 respondent patient-groups with Case studies
- Comparing the answers of patient groups from different therapy areas
- Comparing the answers of patient groups from different countries and regions
The experience of Patient Organisations during the Covid-19 global pandemic - Surveying in progress:
1,720 patient groups completed the survey to help us understand what impact Covid-19 has had on their organisations and how they perceive the efforts of their local healthcare system and government.
- Quantifies the impact of Covid-19 on patient organisations.
- Maps the activities of patient groups in various countries, and across a number of disease specialties, in reaction to Covid-19.
- Identifies the areas in which patient groups are resilient, and those in which they need targeted support.
- Discovers how patient organisations have responded to the challenges of the pandemic.
- Defines optimum strategies to support patient-group relations.
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 aim of the research
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 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:
% 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 scale and complexity of these endeavours vary from country to country, and therapy area to therapy area - depending on whether services are (or are not) available to patients through the normal healthcare systems.
Patient groups are finding ways of delivering patient-related services in safe, digital, virtual forms. Like many other types of organisations adapting to the pandemic, patient groups are relying more on e-communication tools, less on customary face-to-face interaction. For instance, 41% of the survey’s 1,720 respondent patient groups have either increased their organisation’s levels of activity on direct messaging platforms due to the pandemic or newly introduced them. In the case of patients who have little or no access to the Internet, or who find e-communication technology daunting (such as older people, or those with dementia), alternative methods of communication - such as the post, or telephone - have been deployed by patient groups during the pandemic.
The Challenges for Patient Groups During Covid
Patient groups face new financial hardships Patient organisations are counting the financial cost of Covid. 67% of the survey’s 1,720 respondent patient groups report a decrease in their revenue during 2020. As many as 30% call the decrease substantial. Only a few patient groups say that they have managed to obtain Covid-related extra funding from government or pharmaceutical companies. Remote working during the pandemic has helped lower expenses for 54% of the respondent patient groups. But the savings appear marginal, due to a need to spend on new infrastructure and services as a result of Covid.
To meet the financial challenges posed by Covid, patient groups are having to reinvent themselves. Despite their economic hardship and added workloads during the pandemic, patient groups are reaching out to their fellow peer organisations. A US-based bleeding-disorders patient group reflects: “We are all working together more because of Covid. Competition seems to be a thing of the past. Barriers are down. Sharing is the way of 2020.”
The extraordinary demands and pressures placed on patient groups during 2020 have also compelled many to approach healthcare professionals for assistance. 41% of the survey’s 1,720 respondent patient groups are introducing, or scaling up, contact with doctors, nurses, and related health professionals because of the pandemic. These healthcare professionals have been able to supply medical expertise to patients who are relying on patient organisations for support.
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.