For many years the pharma sector has been vocal in its commitment to a ‘patient-focused’ approach. As a result, there does seem to be more attention on the patient across med affairs, marketing and communications activity.

There is undoubtedly still much more that can be done to fully deliver on this mantra, but the direction of travel is great to see. However, are we too narrow-minded in considering the audience represented by the word ‘patient’? Are we considering enough those associated with the patient, in particular any ‘carers’? I was recently involved in an event discussing just this question, and sadly the answer is that we need to do much better.

When we use carer in this context, we are talking about unpaid caregivers. Invariably friends or family. They too may be patients in their own right, or as a factor of being a caregiver. Too often the role of caregiver has a personal impact on an individual’s physical or mental health and well-being, as well as financial health.

Caregivers can be any age: elderly caring for partners; mid-aged caring for parents; parents and relatives caring for children; and even children caring for parents or siblings. In the most recent census in England and Wales, over 120,000 caregivers were under the age of 17. Caregivers often undertake roles critical to the health management of those they care for. Monitoring health and well-being, helping administer medication, providing practical support such as feeding and wound dressing. Importantly, these individuals, and we should in many cases perhaps call them ‘heroes’, often have an integral role during any interaction with medical professionals, and in some cases will even be the primary medical decision-maker. So for such an influential group, we are certainly remiss if we are not including them in our patient engagement activity.

For the purposes of this article I am going to use the terms carer and caregiver, however it is important to acknowledge that in certain cultural communities, and for some health conditions, individuals do not consider themselves caregivers despite undertaking all the aspects we associate with the word. They may see what they undertake as part of family duty, or not worthy of such a categorisation. Understanding these nuances can therefore be important so individuals recognise you are including them.

Wherever we might consider incorporating the patient voice we need to ensure we are also including the caregiver’s voice. In clinical trial development, considering the caregiver in trial design could help with recruitment and retention. The ability of a patient to participate may be affected by the availability or support skills of the caregiver. Caregivers are, in many situations, the enabler, providing transport to appointments, support for correct treatment administration, and helping patients understand and fully consent.

It’s a similar scenario when considering patient education. This should address the patient and the carer, and that might mean different messaging and therefore materials for each. Caregivers might also need additional practical skills education to enhance their support for those they care for.

And, of course, all these engagements and communications need to ensure they are also considering the diversity of these individuals. Once again, success in these areas comes from remembering one size does not fit all.

In recognising and engaging better with the caregiver role, we need to ensure we are also valuing that role. For example, when it is appropriate to compensate patients for their time, travel or similar, also consider the same factors for any caregivers that may need to be involved in the patient’s participation, irrespective of whether their engagement is being sought on that occasion. Codes and regulation should not be an excuse for not doing this, instead short-term ethical solutions need to found and lobbying undertaken to ensure compliance supports including the caregiver’s role appropriately.