Beyond patient centricity – supporting the support network

Our new patient-centric world has already gone “beyond the pill”, and now it’s going beyond the patient. There’s a growing awareness that we need to look after the friends and family who care for their loved ones when the clinic is closed and pharma has clocked out for the night. And that can only be a good thing when it comes to improving outcomes.

More and more people are living with long-term conditions, and pharma has responded by producing ever more specialised solutions to their symptoms.

A move away from the model of primary care blockbuster drugs has seen the industry embrace the patient voice – the best way to understand the needs of a particular group is to listen and respond.

One of those needs is having a strong, informed and reliable support network around them. Not only because people who are well supported in their own communities have better outcomes, but because friends, family and unpaid carers are a vital part of shared-decision making.

In an article in eyeforpharma’s latest Trends in Marketing report, Andy Thompson, CEO of Proteus Digital Health, summed it up.

“The single largest group of healthcare workers in the world is not doctors and nurses, it is a patient’s spouse, parent, sibling, friend who is caring for their loved one. They are by far the most important set of healthcare workers in the world,” he said.

“They do enormous amounts, they have no tools, no rewards, no recognition, no nothing, but if you want a heart failure patient to stay out of the hospital tonight, it is because a woman who is that person’s caregiver at home is making that happen.”

Proteus’ product, a joint project with Otsuka, is the first digital medicine to be approved by the Federal Drug Agency. It’s a tablet with a sensor that sends a signal to the patient’s health team when it’s been taken.

Describing how the innovation had been developed, he emphasised the need for “beyond the pill” to broaden its horizons.

“It is about recognising that when you deliver these kinds of connective solutions around medicines, you have an enormously accepting and desiring customer base that’s doing this work,” said Mr Thompson.

Multiple benefits for all

There’s a lot to gain from nurturing that relationship.

Someone with a long-term condition will spend, on average, three hours a year with their healthcare team.  The rest of the time they are self-managing, but always with the friends, family and carers at their side.

While healthcare appointments are few and far between, medication is often part of daily life for people with long-term conditions. Getting family members on board with issues such as treatment necessity and side effect management could be a key part of tackling poor adherence.

A 2016 study into so-called “surrogate seekers” of health information showed just how influential this group can be in terms of sharing information.

It found that 66 per cent of people who used the internet to find health information in the previous year had done so on someone else’s behalf.

“We found that respondents living in households with other people were more likely to report online surrogate-seeking behaviour,” the report said.

“In many cases, a surrogate-seeker carrying out a high-quality search for health information must then accurately transmit this information before it can have a positive impact on a healthcare decision.”

This suggests that in order for people to be able to make informed healthcare decisions, education programmes need to focus on friends and family as much as the patients themselves.

Who cares for the carers?

We also need to recognise that people who care for loved ones don’t always have the time to care for themselves.

Germany’s Merck KGaA highlighted the problem by conducting a survey of more than 3,500 unpaid carers across Australia, France, Germany, Italy, Spain, the UK and the US.

It revealed that 55% of unpaid carers felt that their physical health had suffered as a result of their carer duties. A total of 54% of unpaid carers often didn’t have time to book or attend medical appointments for themselves.

Speaking to pharmaphorum’s Deep Dive magazine earlier this year, Scott Williams, vice president and head of global patient advocacy and strategic partnerships at the company, said: “It is clear that many carers are neglecting their own health and wellbeing as a direct result of their caring duties.

“Few, if any, services or programmes exist today to help carers with this balance.”

He went on to outline Merck’s “conviction and commitment” to carer support by launching Embracing Carers, an international programme which promises to champion the cause of unsung heroes.

A little help from a friend

This is just one another example of the industry’s growing realisation that friends and family make sure patients have all the information they need, get to appointments on time and take their medicine as prescribed.

Because if we really want to be patient centric, we need to make sure people with long-term conditions have everything they need for good outcomes. And that includes informed and supported friends, family and carers.

About the author: 

[caption id="attachment_44134" align="alignleft" width="77"] Amanda Barrell[/caption]

Amanda Barrell is a health and medical education journalist, editor and copywriter. She has worked on projects for pharma, charities and agencies, and has written extensively for patients, healthcare professionals and the general public.