November 22, 2023

Part 3 – Cost-effective ways to foster patient engagement and co-creation in health communications

Patient engagement

Welcome to the third blog in our series “Placing accessibility at the heart of your health communication strategy.” 

In recent years, there has been a growing realisation in the pharma industry that the wider community needs to be actively involved in the shaping of healthcare solutions, communications programmes included. Thankfully, people living with chronic and acute conditions are no longer seen as passive recipients of health information; instead, they play an increasingly active role in shaping their treatment journey. This shift in dynamics has profound implications for health communicators, making patient engagement and co-creation a key part of their programmes. In this blog, we’ll explore what co-creation is and why it matters, delve into the common barriers faced by pharmaceutical companies, and present budget-friendly solutions to embed the voice of the community into comms programmes.

But first, language matters, especially in empowerment programmes. Consideration is needed on how we refer to the people we are trying to reach. There is a long-running conversation about when and where we use the term “patient” versus “person with a condition” (for example).  This is a nuanced topic and for the most part we will mostly refer to “community” instead, to refer to advocacy groups and people living with chronic or acute conditions.

What is co-creation and why it matters

Co-creation is about collaborating with people living with health conditions and their caregivers to develop an in-depth understanding of the patient experience. It involves listening to the interests of the community, their needs and how they want to receive health information, by actively involving patients in the development of solutions that take their perspective into account.

Co-creation has proven to not only allow health communicators to optimise their support programmes, but also to bring empathy and authenticity, thus generating higher levels of engagement and resulting in greater impact and better health outcomes.

Common barriers to patient engagement by pharma companies

While an increasing number of experts in the industry are passionate about the power of patient engagement and the innovation it can bring, a fully patient-centric programme – encompassing insight gathering, content co-creation, user testing, and continuous optimisation – can sound complex, expensive, and time-consuming.

Before delving into patient engagement any further, it’s essential to embrace a dose of realism and appreciate the many barriers that often hinder patient engagement within pharma companies.

As the pharma industry is facing unprecedented financial constraints, limited budgets and resources can make it challenging to allocate the time and funds required to engage with the communities. Stringent deadlines might mean a marketing team has no time to build in additional meetings and review steps before a regulatory milestone or the launch of a competitor. Similarly, forging relationships with the community requires time and effort, and some companies might lack the right connections in a new disease area, or the right patient insights to effectively identify unmet needs. The stringent regulations governing pharmaceutical communications can also deter companies from actively engaging with patients. And, last but not least, some companies may have a more traditional, top-down approach, which might resist change and collaboration with the communities they serve.

So, what shall you do in these instances? If you, like us, believe that working with patients is not only best practice but is proven to bring better outcomes? There is quite a bit of debate out there on the ‘gold standard’ of patient engagement. Of course, we love to do things perfectly here at Curious Health, but we also are a bunch of pragmatic health communicators, who believe small steps are better than nothing and can lead to meaningful change in the long run.

To help you on your way we’ve gathered some ideas for budget-friendly solutions to overcome these common barriers and help you embed the patient voice into your programmes.

1. Gathering audience insights smartly

The first step of any co-creation process is to go under the skin of the problem and fully understand the people you are trying to reach – their questions and concerns, the sources they trust for information and advice, their pain points along the treatment journey, and any unmet needs that may go unspoken in the clinic.

While a comprehensive market research or a patient advisory board might deliver in-depth insights, there is a lot you can learn about the patient experience without having to commit a huge budget or wait to align everybody’s diaries. Comprehensive desk research can explore community group websites in search for insights and gaps in resources, and be paired with a literature review. A social listening exercise can be dialled up or down according to your needs and budget, from a multifaceted overview of themes, mentions, and FAQs, to a very granular qualitative analysis of conversation drivers and sentiment along the treatment journey. All of these can be integrated by a few one-to-one interviews to further get into the shoes of the community you are serving and bring these insights to life.

2. Co-creating and pressure-testing materials on a budget

Involving the community early and bringing them with you every step of the way is essential to ensure ‘true’ co-creation, where your stakeholders feel valued and part of the project, rather than rubber-stamp an industry initiative. An iterative design process, involving several feedback loops, can help you to achieve this, but might also sound very expensive and time-consuming.

Gathering a group of patients in a virtual co-creation meeting can be a cost-effective way to validate the findings of your initial research and seek input on content, layout, format, and visuals. Virtual meetings are not only efficient but have the added value of being truly inclusive, as they allow people with chronic or debilitating conditions to share their perspectives without having to cope with tiring journeys, increased fatigue, and physical barriers. To make these meetings more interactive, there are a number of free or low-cost collaboration tools like Mural which are very user-friendly.

As you approach the content development phase, bear in mind the health literacy and accessibility needs of your audience, and prioritise the creation of materials in various accessible formats, as guided by the community. In England, 42% of working-age adults are unable to understand and make use of everyday health information, rising to 61% when numeracy skills are also required. (1) Check out our other blogs in the series for more information on the importance of inclusive and accessible writing (2) and how compassionate communications can help reduce health inequalities. (3)

Once the resulting ‘prototypes’ are ready for pressure testing, if you cannot afford a follow-up meeting, you could also email clear guidance and questions to your patient panel, and arrange an offline review of your materials.

3. Working with influencers and ‘expert patients’

Influencers are not only your gateway to a wider audience, but they are able to deliver the message in a way that is empathetic, easy to understand, and presented in a low-friction way to your target audience. Partnering with influencers is now becoming an essential step for many disease awareness and patient activation campaigns – if you’d like to learn more about how to unlock the power of influencer collaboration in the pharma sector (4), we’ve written a full blog post on the topic.

If your time and budget constraints don’t allow you to involve a diverse group of patients, you could also consider collaborating with patient advocates and the so-called ‘expert patients’, who might be able to provide a wider perspective on your target population and their varying needs.

4. Building long-term, sustainable relationships

Co-creation is not just about one-time engagements. Whatever your budget allows today, your priority should be to build honest and lasting relationships with the community you are serving. ‘Earning’ your place in the community is crucial, and this starts by asking how you can best add value. The industry can sometimes be guilty of coming in with beautiful, polished concepts for a disease awareness campaign, which completely ignores all the work that the community groups have done on a shoestring to support their members. Sometimes less is more, and all the community needs from you is to further amplify an existing resource or adapt it in different formats.

It’s also important to think long-term if there are any risks that you might not be able to sustain the investment in a community in the future. What you’ll ultimately be aiming for is to become a valued partner of your community and (progressively) ingrain co-creation at an organizational level, embedding constant feedback loops throughout the entire product lifecycle.

5. Demonstrating results

If your budget is tight, chances are that it will be crucial for you to demonstrate the return for investment of your activities. Define clear KPIs from the start of the project, planning how you will measure the tangible results that you aim to achieve, such as improved patient adherence or increased engagement. Regularly measuring the impact of your co-creation efforts and reporting back to your internal stakeholders can help you justify your budget allocation and secure more funds for the future. It can also allow you to optimise your materials and activities based on how the audience is responding, leading to efficiencies and greater impact.

6. Avoiding common pitfalls

While embracing budget-friendly co-creation strategies, it’s crucial to steer clear of common pitfalls:

  • Engage with patients as equals: In all interactions, ensure that patients are treated as equals and that their voices are valued in the co-creation process. Create an environment where people feel safe to share their opinions and experiences and take their health literacy needs into account to allow everyone to contribute fully.

  • Involve a diverse group of patients: Consider the diverse needs, experiences, and backgrounds of patients to create content that resonates with a wide audience, from newly diagnosed to expert patients.

  • Don’t use compliance as an excuse: While it’s essential to ensure all activities are fully compliant, don’t use the complexity of the regulations as an excuse to avoid patient engagement. Creative, compliant solutions are easy to find if you work with a team that is confident in navigating guidelines and codes of practice for patient engagement.

  • Just do the right thing: However you decide to engage with patients, make a respectful, transparent, and ethical approach your top priority, with the ultimate goal of improving health outcomes.


Patient engagement and co-creation have become pivotal in shaping effective health communications. They can deliver patient-centric communications that lead to increased engagement and, ultimately, better health outcomes. By finding budget-friendly, sustainable ways to actively involve patients and avoiding common pitfalls, pharmaceutical companies can truly harness the power of co-creation in healthcare communications, to the benefit of patients and the industry as a whole.

Partnering with agencies that are equally experienced in healthcare communications and flexible in their approach can often result in cost-effective and creative solutions that can make your budget go a long way. If you’d like to discuss solutions for a frictionless and cost-efficient process, email:






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