C.O.V.I.D.: Five Steps Toward Patient Engagement During and After the Pandemic
Trishna Bharadia
The Spark Global

atient engagement can come in different forms and serve different purposes. The COVID-19 pandemic has highlighted just how important it is to bring patients into the medicines development lifecycle, not only as clinical trial participants but as active collaborators in how the lifecycle is shaped. While many factors for effective engagement are common both during normal times and during a pandemic, the pandemic has brought to light some specifics. This article offers practical advice and tips from the perspective of patients as to how stakeholders involved in clinical research, specifically the pharmaceutical industry, academic institutions, and public bodies, like the National Institute for Health Research (NIHR) in the United Kingdom, can continue to embed the patient voice in the medicines development lifecycle despite the challenges posed by the pandemic.

Like many other sectors, during the COVID-19 pandemic the life sciences and healthcare industry has had to quickly adjust to new ways of working. The industry has made great strides in recent years to embed the patient voice in its work efficiently and effectively. However, the pandemic has made patient engagement uniquely difficult, not least due to the complexities of working with groups of people who may be particularly vulnerable to the virus. Here we consider five steps toward efficient patient engagement during and after the pandemic:

  1. Collaboration and Consideration
  2. Organizational Culture and Standard Operating Procedures (SOPs)
  3. Value
  4. Innovation
  5. Diversity and Inclusion

1. Collaboration and Consideration

At the start of the pandemic, some patient engagement appeared to drop off the radar, whether it was because of adjustments to ways of working, legal and compliance issues, the speed at which things were moving, or changing priorities. Getting people involved as active participants in research and clinical trials was emphasized as the race to understand COVID-19 and develop medicines and vaccines heated up. However, it should be remembered that opportunities for patient involvement along the research and development (R&D) continuum for all health conditions are still extensive, from the setting of research priorities to post-marketing activities like disease awareness campaigns. Plus, the pandemic has brought the healthcare industry, particularly medicines R&D, firmly into the forefront of public minds, creating a potentially much larger pool of would-be patient collaborators from all disease areas. Industry should actively seek them out, whether through patient groups, healthcare professionals, or social and traditional media.

Once patients are being engaged, we need to be considerate to needs specifically around the pandemic but also in the aftermath:

  • Ask patients how to make the engagement work for them, from travel to information to support.
  • What feels comfortable for one person might not be so for another, regardless of what the official guidelines are at the time.
  • Open dialogue is important, regardless of pandemic circumstances; however, it is more important now than ever before.
  • Transparency is key. Offer as much information as possible so patients are able to make an informed decision about the engagement and be open with them about what might be practically possible and reasons why something might not be.
  • Be empathetic. Every patient is an individual who has different needs and is approaching the pandemic in their own way. Do not judge their decisions, and never assume what one patient does will be what another will choose to do too.

2. Organizational Culture and SOPs

Improving organizational culture and SOPs can enhance patient engagement efficiency through the way your organization works in practice. While improvements should have been made pre-COVID, the pandemic has often highlighted where they have not been.

In my experience, the most effective and efficient patient engagement takes place in organizations where everyone understands the importance of the patient voice, regardless of their function area or the level at which they sit in the company. When everyone is on board, patient engagement tends to run more smoothly. Multifunction collaboration is key. During the pandemic, it is particularly important to involve legal or compliance teams as early as possible. The pandemic has posed new legal/compliance challenges due to changes in the way patients are being engaged. For example, it has not necessarily been possible to directly transfer in-person engagements to virtual ones in a compliant way. An advisory board meeting that in-person could have lasted a whole day and involve a large number of people might now have to be split into a series of shorter meetings with fewer people in order to remain compliant with pandemic restrictions. Considering these types of challenges early on, with collaboration from the right support staff, is crucial.

Processes should also be flexible, and SOPs need to be patient- and pandemic-friendly. Can contracts and invoicing be done electronically to ensure a patient does not need to venture out to a post office? Many people have been financially affected by the pandemic, so are payment terms short, and is the payment process reliable and easy to navigate? Is there flexibility in the contract terms to allow for last-minute changes in case the pandemic worsens or abates during the project? Processes that are too rigid will only make patient engagement less efficient and could even deter patients from becoming involved.

3. Value

Patient remuneration has been a hot topic for a long time. However, with the pandemic making patient engagement more accessible and providing the opportunity for more patients to become involved, it is even more critical to identify what “type” of patient you are working with. This is especially true because you may be working with people who you haven’t worked with before. Are they a patient by experience, an expert patient, a patient influencer, or a key opinion leader? If it is unclear, ask for their advocacy CV to determine their experience and training. This can help to determine the range of possible remuneration. For further guidance on fair market value and compensation in the US, refer to the National Health Council’s calculator.

4. Innovation

The current pandemic has truly spurred innovation within the patient engagement space, not least due to a move toward digitalization and virtual working, creating vast possibilities for who to engage, how to engage, and what to engage patients in. This is enabling the creation of more empowered patients because they are or can be exposed to greater opportunities to work with industry in more varied ways and in a wider scope of projects. It also means more potential advocates to work with. The pandemic has demonstrated how agile the life sciences ecosystem can be when required. The industry needs to ensure that innovation continues and that patient engagement opportunities are created in parallel to support this.

5. Diversity and Inclusion

It is well known that the pandemic has brought into much sharper focus existing health disparities and particularly the importance of recruiting diverse patient populations for clinical trial participation. But it should be remembered that diversity and inclusion are important for patient engagement throughout the medicines development lifecycle, and for this we need to take two steps back. First, what do we mean by diverse? And secondly, to ensure greater inclusiveness and diversity, we need to make patient engagement opportunities more accessible.

What do we mean by diverse?

The pandemic has placed particular focus on race (or ethnicity) and age. While these are certainly important, there are other factors to consider regarding patient engagement, including:

  • gender,
  • disability (physical and mental, both hidden and visible),
  • sexuality,
  • location (rural or urban),
  • socioeconomic status,
  • work status,
  • education,
  • health and digital literacy, and
  • geographic diversity.

How do we make patient engagement opportunities more accessible?

Increasing patient collaboration is one way of reducing barriers to clinical research and healthcare for diverse populations. By doing this, the life sciences industry can start to understand how the challenges specific to diverse groups can be addressed. Therefore, we need to create opportunities for a greater variety of people to be involved and included. Ways to achieve this may encompass the following:

  • Involving a diverse set of high-level patient advocates to help develop patient engagement opportunities from the outset, for example as part of a patient advisory council.
  • Developing relationships with patient organizations and patient leaders with unique perspectives, such as BME Against Cancer, Asian MS, Tigerlily Foundation, and Mind Out. Sometimes extensive research will be required to find such individuals and groups. Although many are local and small, they typically are highly engaged with the communities they are trying to reach. So, establishing a connection with these groups can be very valuable.
  • Further utilizing virtual and hybrid environments to make opportunities more accessible, bearing in mind that digital tools might not suit everyone.
  • Creating opportunities around what best suits the participants … and remembering it may not be your typical workday that offers this.
  • Considering cultural and language barriers. This could include providing translation or interpretation services, for example if you’re conducting interviews, advisory panels, or focus groups; producing materials that are culturally sensitive and use inclusive language so that patients feel supported and included in the engagement; or offering anonymity to someone who might not have disclosed their condition to the wider community.

While it is important that the way in which patients are engaged during a clinical trial as participants is improved, this is not the only area of patient engagement that the industry should be looking at as we move through and out of the pandemic. Patient-centeredness within the life sciences industry has come a long way in recent years, but there is a need to ensure that the pandemic is used as a catalyst for making patient collaboration an indispensable and sustainable part at every step along the medicines development continuum. We can use the pandemic experience to create a truly patient-focused future for the healthcare and clinical research ecosystem.