How are international patient organizations dealing with the COVID-19 crisis and how do they adapt their services to the situation?
Especially in challenging moments, it is vital that patients have direct access to reliable information and support. Many people living with chronic diseases are exposed to additional risks due to COVID-19. Patient organizations are demonstrating their importance and value by quickly responding and supporting their members.
admedicum would like to present some best-practice examples of how patient organizations have managed to react quickly to an unpredictable situation, to successfully adapt their services, and at the same time to be active patient advocates. It is also interesting to see the creative communication strategies that have been used. Let’s take a look at each format and what’s been done.
Do you know of other good examples to add to this page? We are looking forward to receiving your message at vincent.schmelzle@admedicum
Use of official databases
Reports about supply shortages of disease-specific drugs dominate the news and further unsettle the public. Many people fear that the effects of COVID-19 on the value chain will restrict their access to necessary medicines in the future. Patient organizations can ensure safety by providing reliable information on drug supply. This works best if they establish contact with credible sources. For example, Spierzikten Nederland, the Dutch organization for muscle patients, refers to the database of the “Committee for the Evaluation of Medicines.”
Patients can search for specific drugs on this website and discover whether it is affected by any shortages from supply chain issues. In addition to preventing panic, this also prevents the spread of false information and is therefore essential for providing patients with concrete assistance.
German patient organizations can follow this example and refer to the register of the “BfArM” or the “yellow list”. Here, you can view current information on supply shortages and contact information of the manufacturers. The availability of medicines is of essential importance for patients with rare or chronic diseases.
In Germany, registration databases for drug information are usually supplied with information from industry and wholesalers and coordinated by the government. Information from pharmacies is usually missing and must be requested in individual cases. Nevertheless, by referring to these databases, patient organizations, without the use of large resources, can provide barrier-free support for their members.
References to external information pages/recommendations
The CML Advocates Network responded to the needs of the CML (Chronic Myeloid Leukemia) patient community, and created a dedicated CML/COVID-19 web portal.
The German patient group Deutsche Atemwegsliga e.V. also offers patients important support by referring to the risk recommendations of the Robert Koch Institute (RKI). This provides patients at risk with reliable information to help them assess their own risk potential and, as a result, make better decisions on the importance of everyday errands and things they want to do themselves. However, the decision as to whether a high-risk patient exposes himself to an increased risk and, for example, goes to the supermarket, is subject to the assessment of the individuals’ decisions.
Accordingly, the recommendations of the RKI can of course only be understood as such and not as binding. However, they are intended to provide orientation for the patient and can be an aid to decision-making. In addition, they prevent people from getting lost in the abundance of information and from being influenced by inappropriate information. In addition, patient organizations offer specially formulated guidelines for handling COVID-19, which have the advantage that they are formulated by other at-risk patients.
Synapse, the platform of the Patient-Focused Medicines Development Initiative just launched its COVID-19 Resource Hub and plans to continue to collect resources there. Orphanet is collecting expert recommendations and services concerning COVID-19 and rare diseases while EURORDIS compiles and frequently updates COVID information from its over 900 patient organization member associations.
Finally, while not technically patient organizations, European Reference Networks (ERNs) are supporting their patients affected by rare diseases during the COVID-19 pandemic with targeted initiatives from each ERN.
Due to quarantines and the increased dangers for at-risk patients, patient organizations are faced with the challenge of meeting the increased information needs of patients. Events and opportunities for exchange are severely restricted. For patient organizations, telephone counseling can be an important way of communication, which must be strengthened in a targeted manner.
In order to specifically address personal and individual questions, some patient organizations offer the possibility to make contact via telephone hotlines. La Ligne-C in France and Mukoviszidose e.V. for cystic fibrosis patients in Germany created telephone hotlines to advise chronically ill patients on COVID-19.
Patients are thus able to contact a medical expert or another patient personally and discuss individual concerns and be referred to the proper place. Patient organizations can draw on their own resources and provide support to members via the hotline. In this way, they can offer patient-2-patient advice and relieve the medical staff of other hotlines.
La-Ligne C (created by patients for patients) is also an impressive example of the strength of innovative collaboration between patients and shows that this collaboration has a real impact on the care of the chronically ill in times of crisis like these.
Webinars and video consulting
Patients with rare and chronic diseases are often dependent on concrete support in everyday life. For example, in keeping normal therapy appointments or psychological counselling. Here there are already some tools that make it possible to stay in contact with either one’s psychologist or psychotherapist virtually, to maintain regular exchanges or to contact a psychologist on call in the event of acute concerns.
For many patients, this is the only way to get psychological support from experts. While it will be difficult for patient organizations to provide such services themselves, they can still offer support to members and interested parties and provide assistance to those referred to by these external services.
In addition, patient organizations will have the opportunity to take the initiative themselves and to inform and support their members with webinars. The Marfan Foundation offered members a webinar where they can learn about the current situation and reflect on its effects on the psyche. In this case, it can be helpful for patients if a psychologist discusses the psychological stress that the current situation brings with it and gives recommendations on how to deal with and manage stress.
While patient organizations are currently under great pressure to provide helpful support to their members, they are also under great financial pressure at this time. Important sources of income are lost due to the cancellation of events. It is therefore also very important for patient organizations to know what government support they can claim and how they can qualify for it.
The National Organization for Rare Disorders organized webinars for its member associations to provide information on the opportunities to request state aid. The webinar also offers concrete help in formulating communication strategies to increase the chances of receiving state aid.
The COVID-19 crisis also offers patient organizations the opportunity to get to know their members better. While POs are expanding their services to include practical solutions for their patients, they also have the opportunity to learn directly from their members and to find out which needs are of the highest priority in this unprecedented situation.
EURORDIS‘ Rare Barometer Voices Survey platform has a questionnaire that patients can fill in from home. Accessibility and accessibility are of the utmost importance in order to collect reliable and replicable data.
The current situation offers an incomparable range of study opportunities, for example for research in virology, and should, therefore, be exploited. Patient organizations can use the COVID-19 crisis to get to know their members better and generate helpful insights for research.
In addition to webinars and video contributions, patients also have the opportunity to obtain information on the coronavirus via podcasts. Podcasts This format offers the advantage that the content can be accessed and played on the smartphone at practically any time. While you are listening to the podcast, you can also engage in other activities.
In order to keep up to date, German radio has been offering a podcast with the virologist Prof. Dr. Christian Drosten from the Charité in Berlin since February 26. The podcast appears three times a week and informs about the current state of research and new findings on infection and disease progression.
Do you know of other good examples? We are looking forward to receiving your message at firstname.lastname@example.org so we can add them to this page