No patient is an island


Pharma has rightly turned the spotlight on patients – but to do the job properly, it needs to look beyond the patient in isolation, and consider the influence of, and impact on, families and carers, who have a part to play in the success of care and treatment plans.

When a serious disease strikes, it has repercussions way beyond the person seeking treatment. Many diseases wreak havoc on the family system, in many cases causing the whole household to suffer collateral damage from the disease.

Historically, pharma research didn't even speak to patients, reflecting the lack of significance placed on them. As we know, that has changed, with patient centricity the mantra of pretty much all pharma companies.

If you accept that it is right that the one who is suffering the disease, benefitting from the efficacy (or not) of the drug or undergoing side effects, should play a key part in the decision-making process about treatment, then surely it is right that pharma should understand the patient role as well as that of HCPs. The pharma lens needs to zoom out even further, and start considering the disease as a property of the whole household – not just the patient, or even the primary caregiver; we need to look at the whole 'system' in which our drugs are operating.

If pharma can do that, it will give its products the best chance of succeeding, the best chance of patients adhering to treatment, and the best chance of adding demonstrable value, to patients, to HCPs and to payers. But achieving this requires insight into the way that caregivers and families influence treatment decisions, and how they help or hinder the drug's path.

There are four main roles that the patient's wider household plays in the treatment of a disease:

1. The witness

Caregivers serve as witness to the whole pathway, from the earliest symptoms. It is principally for this reason that they are already included in around a third of patient market research studies. Sometimes this is because the patient is simply unable to participate, such as in established Alzheimer's disease. In such cases, we interview the caregiver as a proxy for the patient.

But in all illnesses with a significant impact on the patient, there is real value in including the caregiver. Importantly, they generally knew the person before the condition struck; patients often put on a brave face as a coping mechanism, as their symptoms become normalised. Caregivers are well-placed to tell the truth about what has happened, and what has changed; they will reveal the cold hard reality of the disease, adding greater understanding of its full nature, and the treatment burden.

2. Information gatherer (and filterer)

Although information leaflets and referrals to useful websites are mainly given to the patient, it is often the caregiver who reads more avidly and more widely. Though they can be as shocked as the patient at diagnosis, because they are not dealing with the physical or cognitive symptoms, they can be more objective and curious. This is especially true of adult children, more so than for life partners who may be reluctant to become more informed than the patient (in order to avoid holding secrets from them).

Pharma does not produce a lot of bespoke materials for caregivers, and so often the internet is searched in a more random fashion, leading to dilution of the message the company may want to convey. Remember that caregivers don't just need information for the patient, but also for themselves, to support the patient, to plan their own lives and to manage their own anxieties.

3. The mainstay of support

A good caregiver can alleviate symptoms such as pain and optimise the treatment pathway. But the family can give equally important support to the frontline caregiver in turn. For example, when a mother is in hospital with a sick child, her husband and sister may be backing her up and meeting her needs.

"Many patients fail to keep to the optimum pathway because they perceive that this is causing family members stress"


Many patients fail to keep to the optimum pathway because they perceive that this is causing family members stress: one lady stopped her cancer treatment because her son was stressed at work, and she didn't want to trouble him to take her for her appointments.

Is there a rationale for pharma to meet broader family needs so that the patient's needs are better met, and would there be a 'value pay-off'? Understanding the pressures of the support network could provide a simple solution to a complex problem. For example, in the case of the lady stopping her treatment, by finding another solution for transport.

4. Influencer of treatment choice and compliance

Because they may attend consultations, the wider family also has an impact – albeit subtle – on treatment choice. If they anticipate their loved one being unable to cope alone with the side effects of a treatment, or are nervous about its administration, they may not be fully committed. Conversely, they can encourage the patient through side effects.

Sometimes doctors hold back some treatment options in the absence of carers; it happens across a lot of diseases and is potentially a key point of leverage for pharma if it can provide proxy family support and satisfy doctors that patients can cope with treatments.

The family is a force that needs to be considered, because it can work for or against the optimal pathway to treatment. Family members may drive discussions on treatment switching, or bring up new treatments they have read about, or they can be a delay or barrier. They can encourage or block compliance.

Understanding what needs to be done

If we accept that, in many cases, patient centricity needs to be wider than just the patient, what insight does pharma need to achieve this – and what should pharma's response look like?

"By focusing on the whole 'system' around the patient, pharma can help drive effectiveness and demonstrate added value"


The principal aims for pharma should be to have a positive influence on treatment choice and adherence, plus true patient focus. The commercial imperative is to demonstrate differentiation of an offer which might be centred on a drug that is clinically similar to other treatments. But by focusing on the whole 'system' around the patient, pharma can help drive effectiveness and demonstrate added value.

On a practical level, that means understanding what information and practical support caregivers and families might need in order to create that 'halo effect'. If pharma companies can show that they really understand that whole system, it will engender a positive feeling among HCPs, who will understand that the full package can be more effective with the wider household on board – not to mention that the patient will be less demanding of precious HCP time.

Of course, in the real world, much of the information and support that the family needs will not be clinical: it will consist of more practical, everyday help or reassurance which will enable them to take better care of the patient. So pharma may have to think beyond the clinical; for example, working with patient support organisations whose scope extends beyond pure medical help.

Caregivers and patients' families have multiple roles, and are an integral part of the disease and its management. They are not simply a proxy for the patient who is too ill to talk to us; they are also information seekers, advocates and influencers on the disease course and treatment journey, and they have a huge influence on the choices the patient themselves makes.

Increasingly, those choices have an impact on our industry. It is no longer sufficient to look at the patient and their needs – clinical, emotional or practical – in isolation. The pharma company that looks beyond, and seeks to understand how the family is operating around the person with the illness, will benefit.

By understanding the whole sphere of influence on the patient, they will be able to offer family support and information which helps optimise the patient pathway, and demonstrate that their approach is adding value to the patient, their family, to HCPs, and to the wider healthcare system – and that will give them a true competitive advantage.


About the author:

Jane Barrett is master practitioner, Patient Insights, at Cello Health Insight. She can be contacted at

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Linda Banks

24 February, 2015