Having spent several years working in a patient-facing role in the patient advocacy world, I find it heartening to see the progress being made within the pharmaceutical industry towards patient-centric modes of working. The industry now recognises that healthcare is evolving, and in particular the role of the patient within it. More and more, people are empowering themselves when it comes to their health, and they expect to be involved in decisions about their care.
For someone who has made a career out of working with patients, this is all positive stuff. A phrase I picked up early in my career is that patients are ‘experts by experience’, and as such their views should carry as much weight as the views of those traditionally approached for expertise: healthcare professionals, research staff, payers, etc. If patients are truly experts by experience, then it’s even more important that they be brought centrally into the work that we do.
This concept of ‘patient-centricity’ is becoming widely accepted as part of good practice within the industry and more than just a buzzword. In theory, that is, at least. While many within pharma are on board with patient-centricity conceptually, in practice it hasn’t yet translated into a robust approach, consistently embedded into day-to-day work.
Similarly, the concept of co-creation should be accepted as good practice within a patient-centric approach, but is not yet a routine way of working. There are many examples of excellent patient- focused projects which have involved patients fully as co-creative partners in their development, however these examples tend to be found in companies that have understood and adopted patient-centric working as a whole.
But what exactly do we mean by ‘co-creation’? On the face of it, it’s fairly simple: to create something in partnership with others. Patients, in this case. But scratch beneath this simple concept and it can be surprisingly complex and hard to navigate. Depending on your discipline, ‘co-creation’ can mean anything from the ‘macro’ – improving healthcare systems, policymaking – to the ‘micro’ – focus groups, reviewing documents.
These are all valid, and so I have tried to highlight barriers and approaches to co-creation that address this spectrum, with a slight focus on the ‘micro’ because, for most, these will be the projects that represent a gateway into working in this way.
Co-creation has benefits for patients and the industry we work in, and is hopefully a practice we’ll see adopted more and more. For that reason, it’s important we all understand how to adopt this approach and adjust our thinking, and find ways to overcome some of the barriers.
Barriers to co-creation
From my time working across both advocacy and medical communications, I’ve been able to identify some of the barriers that can prevent us from working systematically and confidently with patients to co-create solutions.
For some, a major barrier is a lack of confidence in the process of co-creation. This is often linked to fears around compliance in terms of how and when to work with patients, and what the ‘correct’ process is. People see a potential minefield of regulations waiting to trip up the unsuspecting, and this – perhaps understandably – erodes the desire to work with patients.
Others may be reluctant to involve patients due to tight timelines for projects, knowing that it can be a lengthy process to develop relationships with this community and engage them as effective co-creation partners. At the minimum, a patient review alone adds an additional step to any project and so has to be factored in early during planning.
Sometimes it may be a lack of access to patients that presents the barrier, particularly for rare diseases, where the number of patients who have the condition and are able to co-create may be very small indeed.
This leads us on to another barrier, which is accessing the ‘right’ patients. In many cases, again particularly with rare diseases, the patients typically working with pharma companies are ‘expert patients’. Although their value is unquestionable, due to their knowledge of the disease space and experience of working with pharma or healthcare systems, these individuals don’t always represent the typical patient well.
The most common barrier is, however, simply a lack of experience in working with patients. In these cases, it may be that the benefits of co-creation are not known, or it’s seen as a ‘nice-to-have’, or that people just don’t know how to get started.
The fundamentals of co-creation
Some of the barriers outlined above will take time to overcome, and for many it will be the case that consistency and comfort with a co-creative approach will come through experience. It is useful, therefore, to outline the fundamental points of co-creation to help overcome some of these barriers and hopefully give people the confidence to have a go.
Enter the process with no assumptions – about your audience or the process you’re about to enter. Firstly, recognise that patients are human, with all the complexities that brings in terms of lifestyle, motivations, level of intelligence, emotional state and so on. The more you free yourself from any preconceptions about your intended audience, and take the time to engage and listen without assumptions, the richer your patient engagement experience will be and the better the outcome.
Similarly, try not to make assumptions about the process of co-creation with patients. Who knows what you may uncover, or what valuable insights you may gain – or what frustrations you may encounter? It isn’t always plain sailing, and it isn’t always going to tick all your original boxes. Have a goal, but don’t assume the path there will be linear; instead, try to get the most from the learning curve.
Begin early – do not wait until you have a final product/material to give to patients for review. This is far too late for effective input and is merely giving lip service to co-creation. Instead, involve patients from the start: they will help identify suitable wording, imagery or formats, and you should design solutions based on this input. It may take longer, but weigh this against the impact of having to start again from scratch based on unfavourable late reviews, or worse, an ineffective product.
Allow more time for co-created projects – working with patients can take longer than expected. You may have to begin by building relationships with a patient community to get people comfortable with what you’re asking
them to do. Taking the time to do this properly will pay off – you’ll develop a better solution the more engaged your patient partners are. Also, be empathetic to the fact that in most cases you’re working with people with medical conditions; their time and capacity may be limited, no matter how high their enthusiasm.
Be flexible – see the process of co-creation as an open dialogue, and be flexible enough to change direction based on the feedback you receive. This is probably the trickiest approach to adopt, due to the implications for budgeting, year-planning processes, etc. If you can, adopt some flexibility within your goals and, where possible, rely on the expertise of experienced staff.
Use experienced staff – patient engagement and co-creation are not always straightforward. Use the expertise of people who have worked with patients as partners before. Agencies can help offer support in overcoming the barriers listed above; or you may have people internally whom you can approach for their expertise.
The expertise and experience found in patient advocacy organisations can also be invaluable if you’re able to work alongside these groups.
If the obstacles to co-creation are overcome, the rewards can be very positive: from improved patient empowerment and health literacy, through to the knock-on improvement in adherence and uptake of support programmes. Patient communities are usually extremely enthusiastic about taking part in processes that improve the lives of other patients, so harness this energy and expertise.Try setting up ways of working where patients are brought on board as partners; from sharing their insights to collaborating on solutions, the barriers are worth overcoming. After all, their experience makes them the real experts!