Consumer engagement has been an overused catchphrase the last few years, especially in the medical conditions or diseases sector. Often, receiving grants now depend on an organisation or researcher engaging with us. There is also a significant amount of intellectual property to be gleaned (for free, and often not acknowledged) from consumers, and high profile consumer engagement can lead professionals to speaking invitations, publications, and other career promoting activities. People with dementia as advocates including members of Dementia Alliance International (DAI) are more than ready for continuous involvement in the matters that are about them, in line with the philosophy that people with dementia have been seeking for over of 20 years of “Nothing about us, without us”.

We want to be ‘engaged with’, but in ways that are beneficial for all of us. This means full inclusion, equal acknowledgement and equal recognition for our work. I’d suggest that most advocacy organisations, and organisations who need to engage with consumers in general, and including researchers, too often mistake the use of ‘consumers’ in media campaigns or social-media interactions, or as faceless participants in research, and do not see the real value of these relationships nor realise that a true partnership is necessary, and hugely beneficial to them.

It is even more relevant today as Consumer Directed Care is being implemented (at least in Australia) that to become a truly consumer-centric or customer-inspired organisation, the voice and stories of end users must be consistently infused into the company, not just inclusion in the media, at a meeting or an event, but in reflecting every aspect of the organisations or research projects. Advocacy groups must seek to build stronger relationships to the greater mutual benefit of both; it needs to be a win-win result. We want the opportunity to provide early input, not just in the design and execution of policy or services or in clinical trials, but also in disease awareness, dementia friends campaigns and education campaigns.

Continuous and long term engagement can have a very positive impact on outcomes for both the consumers and the organisations. For example, as companies try to develop value-added services, they’re learning the hard way that the needs and preferences of their consumers are different to their own, and also not just from one person to another, but depending on where a given individual is in their dementia progression, from diagnosis to ongoing management.

Even people with exactly the same type of dementia (or other condition), have different symptoms and experiences, so only engaging with a few of us, or even as low as one or two of us in some cases, is not helpful for all consumers. Following Scotland, Alzheimer’s Australia was an early adopter of healthy consumer engagement, and the new model they are currently developing, which will go beyond a few groups who met and made recommendations on behalf of the more than 350,000 people with dementia and our families and supporters, (often the same people involved for many years), to a much broader consumer base is sensible. It is easy to engage with large numbers of consumers now, thanks to technology, in ways that are especially cost effective for an organisation, and I’m thrilled they are embracing technology in this way to ensure a much broader consumer voice.

Long-term engagement is critical, not just to understanding consumers, but to empowering them to inspire the organisations that serve them.

Any organisation that has entered into a disease space (e.g. dementia), also needs to be open to hearing directly from the patients (consumers). They need to hear our stories, to connect with them, and then more importantly, to act upon them. Consumers can be a tremendous resource to an organisation or researcher, as active, engaged participants and contributors to organisational goals or indeed, to research projects, and not only to critique or demand services.

Therefore, let’s go beyond the template of ‘them and us’ when trying to build consumer-centric organisations. Instead of clinging to the unobtainable grail of engaging with a few, let us all embrace our social media-dominated, Internet-informed world, and embrace the availability and eagerness of increasingly empowered consumers. Let’s seize the opportunity to work together, that is, with the people you want to serve.

A true partnership or collaboration includes discussing a vast array of subjects, including the progress and successes, but also the failures of the organisations’ policies and services. It is better to embrace even the failures; as in any tough lesson in life caused by a personal crisis, the learnings from failures can lead to the greatest change and innovations, and to a stronger self. It is far more productive than the organisation burying its head in the sand only to serve its own corporate or organisational goals. If an organisation is really there to serve consumers, then that is exactly what they should be doing.