Patient engagement has become a bit of a catch-all term in healthcare. At times, it’s reduced to a ‘tick-box’ activity where patient experts are brought in to validate a developed product. This can range from as little as a 20-minute phone conversation, to a pharma company creating a diverse patient council of advocates and associations.

‍

Engaging patient experts, KOLs and other key stakeholders in a truly collaborative ‘co-creation’ development process yields the most impactful, and adoptable, solutions. This type of collaboration requires involving patients and end-users at each and every step of the process, rather than just providing a solution to validate. Although this is not widespread practice now, some forward-thinking companies are starting to adopt a more consistent collaborative approach and realising the strategic and financial benefits across the product life cycle.

‍

Why is Patient Collaboration Important?

Put simply, you can’t expect a product to address the needs of users if those users are not consulted throughout its development. 

‍

Where pharma companies engage and collaborate with patients during drug discovery and clinical development, they get better patient recruitment and retention. If not done right, this can be expensive and lead to a product no one wants to use. Developing a digital product requires the same rigour, but the collaboration must continue during and after its first development and throughout the product life cycle. 

‍

Supporting a patient in specific parts of their journey will be different from product to product, and patient to patient. To find the balance between personalisation and viability requires collaboration with a wide sample of patients and patient experts. 

‍

With digital, it’s a little more complicated than traditional drug development too: The solution that’s first launched will need to be updated and optimised regularly. While real-world data from the solution will be crucial for this, patient collaboration must also continue beyond launch. You can’t just hand over research to a commercialisation agency who has no idea of the patient experience; it must be a process of continuous engagement with the patients, i.e. your solution’s end users, throughout the entire journey.

‍

Done right, this type of collaborative co-creation and continued optimisation will result in products that address and adapt to patients’ changing needs. Don’t shortcut it; be truly diverse in approach and involvement.
‍

Design with patients and for patients: Involve patient experts and patients at the right time

Patient advocates can often talk on behalf of a community; they are people who want to improve awareness and often resources for a particular disease or condition. Whereas patient experts are usually people with lived disease experience, who are also journalists, surgeons, scientists, designers, technologists, and more. They have skills that can be extremely valuable to those developing products, and they are willing to collaborate with companies working in their disease area. 

‍

Traditionally, pharma has focused more on patient advocates. But today, more patient experts with lived experiences are needed who can go on the journey with the company; particularly in clinical and digital. Of course, you’ll also need to involve a representative sample of patients outside of KOLs, advocates, and experts – as you would in any other clinical trial. In MS, for example, the PRO validity and measurement had not been assessed or challenged for many years. A recent paper demonstrated the value and impact of involving patients living with MS to elicit clear definition of value, new concepts of interest and challenge current data collection processes and tools to maximise the value in pivotal clinical trials. 

Which stage of development you’re at will determine which groups you need to collaborate with more. For example, during the creation stage, patient experts might be consulted more. But to gather broader insights and understand how your product solution can address the vast majority of challenges that a patient population has, you need experts and a diverse patient group. You should have socio-economic, geographic, and ethnic diversity too, particularly in pre-development stages. The challenge is having a process of identification and contracting to enable you to work both globally and locally, and in a compliant way that offers Fair Market Value (FMV) for services rendered. Many companies see this as a major hurdle, sometimes not even getting insights or even validation.  

‍

Don’t reinforce existing bias through patient engagement 

In my experience, by the time most companies think about engaging with patients they’re already five to six years into development. By this time, mindsets have shifted and teams are thinking more about efficacy than patients’ real needs. It can often result in the type of patient engagement that simply confirms the bias present throughout the development process. This, unfortunately, leads to products that don’t fit well into patients’ lived realities, and quite simply aren’t successful. 

‍

Engaging vetted and knowledgeable patient experts at the start, and then through iterative processes such as patient experience panels (PEPs), is the way forward to success; it’s already proving impactful in solution development. By creating a more agile and sprint-based approach within the PEP model, solution design and development is more efficient and effective. This is something that larger, general patient platforms operating a GIG economy model (one-off small engagements) are unable to support. A recent example in a rare life-threatening disease addressed an ongoing business challenge of treatment persistence through a series of PEPs, initially held globally then locally, which generated deeper insights into the challenge of managing side effects and medicine adherence problems. Years of HCP research hadn’t solved the issue, but when outcomes from the PEP were presented the company could then design a solution improving specialist /patient dialogue.  

‍

Action must be taken to engage patients early and throughout the development process to avoid this pitfall. If you’ve already reached this stage, you may need to take a step back to get your project on track and focus on changes that will get you to an adoptable MVP.
‍

Think global and go local with patient collaboration 

Developing health tech solutions for different cultures and ages, especially patient communities not represented by traditional patient groups and advisory boards in life sciences companies is challenging. This often results in launching first in larger markets that can provide the validation and the revenue to help reach the smaller markets, which makes regions like the US or the German speaking DACH so attractive. 

‍

If you think global, you can then go local with patient engagement and tailor your product based on feedback and collaboration in new regions. Understanding the interaction between specialisms within a country with a shared care approach is very important. Working with vetted patient experts who have the lived disease experience, knowledge and general patient connections to input for the project entirety from concept to commercialisation is the ideal.
‍

What Does the Future of Patient Collaboration Look Like?

Let's take a moment to contemplate the state of health tech. Up until now, we've been stuck in a cycle of creating and releasing digital health products that remain largely untouched and unadopted. There’s a solution we have yet to fully realise: the concept of widespread patient involvement to escape this spiral of failure and underperformance.

‍

Online patient communities and patient ambassador networks are part of this equation, but they are just the beginning. There's a deeper level of engagement we can tap into with patient collaboration platforms. These emerging solution providers provide an avenue for companies to connect with patients and patient experts in a manner that transcends traditional advocacy or gig economy interactions. Complex business challenges require more than just one-and-done approaches. We need continuous involvement, iterative collaboration, and trust. 

‍

The essence of these collaborations hinges on trust, and nothing safeguards trust like compliance and data privacy. A well-designed collaboration platform creates an environment where patients feel safe and supported to contribute.

‍

These collaborative platforms can be opened up to diverse groups of institutions and sectors, all seeking to understand the intricacies of healthcare, to track changes, to understand how patients respond to these changes. These platforms aren't just about collecting voices; they're about accelerating communication, understanding unmet needs, and conjuring up solutions that make a real difference.

‍

To reach this future and foster the kind of patient collaboration that we're envisioning, we must start with a transformation in the mindset of those at the very heart of product development.  The mindset of the health innovator is as follows: to invite and integrate the contribution of patient experts and patients right from the inception of a product, then to carry that collaborative spirit through the launch and into the continual refinement during the product's lifecycle.

‍