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Rethinking our approach to rare disease communications during COVID-19 and beyond

By Jonathan Morton

The COVID-19 pandemic has had devastating effects on the health and livelihoods of millions of people around the world, as well as impacting the global economy. What isn’t widely reported is the unprecedented challenges that COVID-19 has presented for how we communicate as a rare disease community.

In many areas of healthcare, lockdown and social distancing have limited opportunities for face-to-face engagement and necessitated a move to virtual platforms to exchange ideas and provide medical advice. Resources have been reprioritized to focus on caring for patients with COVID-19, meaning that some routine clinic appointments have been limited or stopped altogether. Care protocols have been revised and redefined to minimize risks to patients and healthcare professionals. Plus, access to much-needed novel therapies may be delayed as clinical trials are forced to pause until in-person clinic visits can be resumed safely.

With all of this going on, there is a danger that rare diseases become deprioritized within healthcare systems as governments try to deal with the acute and unfamiliar challenges right in front of them. This breeds uncertainty and additional psychological burden for patients and their families, who may be left with little information on how and when their essential treatment and support services will be available.

Even as we begin to emerge from the first wave of COVID-19 to establish a ‘new normal’, it is clear that challenges will remain for some time as different countries progress at different rates and the threat of further outbreaks looms. Data from a survey of healthcare professionals indicate that many expect to continue working virtually to some extent, making use of telemedicine, remote learning and video communication platforms, among other tools.1 As with any new way of working, it will take time and expert guidance to support this transition.

So, what does this mean for communication in rare diseases?

  • Is it an opportunity to rethink the way we engage within the rare disease community so that our approaches are truly fit for purpose?
  • Can we say goodbye to the more traditional ways of communicating and adopt a more agile and targeted approach, encompassing digital tools to support remote engagement?
  • Can we realign our efforts to what healthcare professionals, patients and caregivers really need?

This article provides an overview of some of the methods we’ve adopted at Comradis to facilitate a revised approach to communication within the rare disease community.

Recalibrate to identify the most pressing needs

  • How have things changed?
  • How do things differ by country or specialty?
  • How do we need to adjust our communication plans?

It is clear that we live in a very different world to that which existed at the start of 2020, when our plans for the year ahead were put in place. It’s likely, therefore, that the needs of our audiences will have changed too, and that priorities will vary from country to country.

Rather than forging on with our original plans, it’s important that we take a step back and check in with key stakeholders to find out what their most pressing needs are now, so that we can adjust our focus accordingly. These may be COVID-19-specific issues, such as the need to transition patients to home-based care to ensure continuity of treatment, or it might simply be that the move to virtual interactions has changed audience preferences and needs for how and when they receive information, even if the topics covered in communications remain the same as pre-COVID-19. A recent survey of healthcare professionals indicated that a large proportion still want to receive information on available and investigational treatments and educational materials even during the COVID-19 pandemic, with email being the preferred medium of information sharing (55% of respondents) rather than virtual calls or presentations (31% of respondents).1

For patients and caregivers, especially those affected by chronic multisystem diseases that require care from several specialties, a clear road map for the continuation or realignment of care is often the most pressing need rather than disease education. For those participating in clinical trials, guidance around whether they will be able to continue to receive investigational therapies is paramount. Without this recalibration step, we risk wasting time, money and energy pursuing a communication campaign that may be off-key and out of touch. By putting the most pressing needs of patients and healthcare professionals first, we can have a meaningful impact that preserves and strengthens professional relationships and creates an environment where progress can be made more readily in the long term.

Make every communication targeted and actionable

  • What action do we need our audience(s) to take?
  • What information do they need to be able to do this?
  • How can we provide the necessary information in a way that makes our audience’s life as easy as possible?

We are all bombarded with information and requests for our attention on a daily basis, and healthcare professionals are no different. In many cases, however, individuals with rare diseases may be just a small segment of the patients they treat, so they are unlikely to have the headspace to readily engage with every request that comes their way. The challenges around COVID-19 have exacerbated this even further. Rather than add to the pile, we need to put ourselves in the shoes of our audience and consider how we can keep our communications targeted, simple and, above all, useful.

One way to do this is to be directed by what action we need our audience(s) to take. What information do they need to carry out this action, and how can we provide this information in a way that makes their lives as easy as possible?

Let’s look at the example of assisting healthcare professionals to move patients with rare diseases to home-based care to ensure continuity of treatment during COVID-19. To do this, they need know several things, including but not limited to:

  • What support is available to them and their patients to ensure continued access to a given treatment
  • What the logistical implications are for them and their patients
  • How they can ensure patient care is coordinated between multiple specialties
  • What the potential risks of home-based treatment administration and monitoring are, and how they can be mitigated
  • What the implications are for treatment reimbursement

We can make their lives easier by providing step-by-step guidance via virtual meetings so that we can answer questions in real time, as well as by providing written resources that can be used as reference guides or be passed on to patients or other stakeholders involved in the process.

Go beyond words to facilitate behaviour change

  • What does best practise look like for each audience?
  • What barriers may make this challenging?
  • How can we support our audience in taking these actions?

No matter how comprehensive the information we communicate, there will always be questions or unanticipated challenges that affect how useful it is to our audience. To address this, we advocate going above and beyond core communications to provide practical support to help our audiences adapt their behaviour. Ultimately, our role doesn’t stop the moment our educational content is sent or after a virtual meeting has been delivered. This is just the beginning.

A prime example of where support may be needed is in helping healthcare professionals and patients adapt to interacting via virtual consultations rather than speaking face to face. COVID-19 has placed a particularly heavy burden on patients, with more than one-third of healthcare professionals reporting that their patients were experiencing mental health challenges as a result of lockdown restrictions.1 Although the move to telehealth or virtual consultations has been met positively by many patients,2 some aspects are nevertheless more challenging in the virtual environment because so much of the way we communicate is non-verbal. For example, 35% of patients report difficulties describing their own symptoms and 34% difficulty understanding their doctor’s recommendations without in-person interaction.1

Facilitating effective communication is of the highest importance in rare diseases, where available support, understanding and awareness of conditions may be limited. To address this, we can support healthcare professionals to help them optimize their verbal communication skills, structure calls to facilitate patient input and questions, and put patients at ease in this unfamiliar environment. To support patients, we can provide agenda-setting tools they can use to prepare for consultations, such as questionnaires or checklists. To ensure they understand their doctor’s recommendations, we can provide healthcare professionals with adaptable lay summaries of core information by that can be sent to patients by email after the call.

As the global healthcare ecosystem, and with it the rare disease landscape, continues to evolve over the coming months and years, clinicians, patients, caregivers and many others will be trying to find their feet and understand how to function in the emerging new normal. As communication partners, it’s our role to support them in adapting their behaviours so that they can flourish in this new environment.

Putting theory into practice – facilitating the transition to a hybrid model of patient care

Comradis is developing a campaign to support healthcare professionals and patients with a rare metabolic disease to move to a hybrid model of care.

In recent months, there has been a substantial decline in the rates of diagnosis for this condition. In addition, an increasing number of patients who were newly diagnosed pre-COVID-19 are being lost to follow-up before treatment can be initiated. By providing practical alternatives to traditional in-person clinic visits, our aim is to tackle these issues and establish a workable hybrid model for patient care.

Our approach to communicating around this topic centres on the core principles described in this article:

  • Identify the most pressing needs
  • Provide targeted and actionable information
  • Support behaviour change

The hybrid model of patient care involves moving away from the traditional approach where everything takes place in the hospital setting, to a world where clinicians and patients have an array of virtual, remote and in-person options available to them depending on their specific situation and needs.

To support this transition, we are working with stakeholders across several markets to understand the pressing challenges within their country and develop an array of digital tools that can be used to guide and support clinicians and patients on an ongoing basis.

For clinicians, these include:

  • A series of podcasts that explain how COVID-19 has impacted the diagnosis and management of patients and provide advice on how clinicians can address key 7 challenges by adopting a hybrid care model. These are supplemented by real-life patient case studies that illustrate how virtual consultations can be used to address some routine aspects of patient care without the need for in-person clinic visits
  • Instructional videos to provide a practical demonstration of what an effective virtual consultation looks like
  • Self-paced learning platforms to enable users to practise their virtual consultation skills with simulated conversations and multiple-choice questions
  • Interactive decision trees to help clinicians determine when in-person clinic visits are necessary

Patients and caregivers will have access to a series of tools aiming to alleviate the psychological burden and uncertainty around transitioning to a hybrid model of care:

  • Short animated videos that address important aspects of living with their disease during COVID-19
  • Podcasts by expert clinicians and patient advocates explaining why and how care plans are being adapted during COVID-19
  • Downloadable and digital resources that help them prepare for virtual consultations with their doctor, including practise with simulated conversations
  • Infographics to address patients’ most frequently asked questions around testing and treatment during COVID-19, such as “When is it essential that I visit the clinic and when can I do so safely?”

By supporting our audiences to adapt to new ways of working, we are increasing the likelihood that our message will be taken onboard through minimizing the barriers to action and providing practical assistance to overcome them. Plus, our continued engagement enables us to be nimble and to tackle problems as they arise; maximizing our chances of success.


It is clear that COVID-19 has forced us to reassess the way we communicate around rare diseases. Success will rely on refining our approach to ensure that we are addressing the issues that patients, caregivers and healthcare professionals are most challenged by; targeting and streamlining our communications to make life as easy as possible for our audiences; and providing ongoing support to facilitate transition to a new normal way of working. By applying these approaches, we can create meaningful engagement with those we are trying to reach and ensure care of those affected by rare diseases remains a priority.

Next steps

Do you have a rare disease challenge that we could help address? Contact to learn more about the wide range of services Comradis offers and to discuss how we can support you.


1. Sermo COVID-19 HCP Sentiment Study, April 2020.

2. Health S. Telehealth patient satisfaction high, paves the path for future access. Patient Engagement Hit, 1 July 2020: https://

Developing partnerships with clients, patients, caregivers, advocates and clinicians to secure a better future for families affected by rare diseases and uncommon cancers For further information, please contact us

Comradis is part of AMICULUM, an independent global healthcare communications and learning business established in 2001. AMICULUM combines small agency entrepreneurial flair and flexibility with the experience and ability to deliver complex integrated programmes anywhere in the world. AMICULUM is a family of nine healthcare agency brands, each with its own distinctive character and area of expertise

12th August 2021


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