5 questions: making Multiple Sclerosis care more patient-centric

Trishna Bharadia, Multiple Sclerosis (MS) patient advocate, talks about her goal to make MS care more patient-centric, ahead of her talk at the eyeforpharma Patient Summit Europe.

Trishna Bharadia was first diagnosed with relapsing and remitting MS in 2008, at the age of 28. However, not content to simply manage her own condition, Trishna has become an advocate for other people with MS, and campaigns for better NHS services and more true ‘patient centricity’.

Do you think MS care in the UK can be described as patient-centric?

In short, no. There are still too many gaps in services for MS care to even start to be labelled as patient-centric, one of the biggest of which is MS nurse availability.

According to a survey from the MS Trust, 64% of people with MS lived in areas where the MS specialist nurse caseload was in excess of the MS Trust’s sustainable caseload figure.

At the same time, there’s a huge discrepancy in patient awareness about MS specialist neurologists. I personally believe the patient should be at the heart of the decision making, but there are few tools for them to develop the knowledge to participate in their own healthcare.

Is the patient centricity concept being taken seriously by healthcare organisations and pharma companies?

I think at times it can end up being just a tick-box exercise – so there needs to be much more engagement and a greater willingness to involve patients in a meaningful way at every stage of the drugs/service development process.

From my own experience, I’ve seen plenty of projects that are supposedly patient-centric but which have, in fact, had little-to-no input from patients during the development process. The result is something that doesn’t necessarily consider patients’ needs.

Where can industry improve to become more patient-centric?

I often feel that health organisations are too scared by regulations to fully commit to engaging with patients in the way that they and patients would perhaps like to. From that perspective, rules need to be changed to make it easier for patients and industry to interact in a more meaningful way.

More needs to be done to join up care, too. The NICE Quality Standards for MS talk about MS patients being given access to personalised care plans and regular reviews, but a recent MS Society survey found 83% of patients hadn’t been offered either. This means a lot of patients aren’t informed of new developments, services or treatments that could benefit them.

What role can digital technology play in providing patient-centric MS care?

There is potential for digital technology to be beneficial in MS care. It could give patients greater ownership of their health information and encourage their active participation in their care.

In MS, particularly, the wide range of symptoms can often make it difficult for a patient to monitor their own disease progression. An app for that, for example, could massively aid in day-to-day management of the disease.

It could also provide more opportunity for patients to participate in trials via remote monitoring, as well as increase access to MS nurses and specialists via video conferencing.

That being said, these technologies need to be adopted seamlessly into a patient’s life before they can be considered game-changing. There’s also a lot to be done to improve data safety and privacy, digital literacy among patients and general trust in pharma-developed products.

Which organisations are setting the pace?

There are pockets around the UK where patients are becoming more involved in their care. The Royal London Hospital, for instance, has been particularly active in improving patient engagement by setting up a patient advisory panel, experimenting with group clinics, running patient research days, and offering Skype and telephone appointments.

The MS Brain Health Initiative is another example of a leader for the cause. It calls for a new consensus in the management of MS regarding the importance of time management during every stage of the disease. It advocates speedy diagnosis, timely reviews, and a proactive care approach – all of which puts the patient at the heart of their disease management. Examples such as these need to become the norm.

Trishna Bharadia will be speaking at the upcoming eyeforpharma Patient Summit Europe from 19-20 October. Find out more about the event here.