How patient empowerment could change healthcare and pharma at the most fundamental level

With ageing populations and increasing demands on healthcare services, empowering patients to help put them in control of their diseases can reduce their burden and improve their outcomes. But aside from this obvious need, there is the simple fact that if pharma and healthcare systems don't meet the needs of empowered patients, they will soon be left behind in the modern world. 

"The way patients engage with so many other sectors these days, whether it's transportation, retail or banking, has shaped their expectations of how they're going to be treated or what types of information are available from a health perspective," says Tim White, head of innovative channels at Teva Pharmaceuticals. "It will happen anyway. Patients will have access to more and more information, technology advancements will continue. If this isn't going away then our structures and our systems will need to effect the changes. It's just a matter of trying to shape it in the right way so that the benefits can be achieved to the healthcare system, to patients themselves, to family members or caregivers, and other stakeholders." 

The forces driving patient empowerment can come in many forms, but so far the internet has driven the way, with its critical support for patients who want to be more informed and better connected. The next stage will see digital tools take centre-stage.

"Previously a lot of this was focused on leveraging social media channels," says White, "empowering the existing footprint of patient advocacy groups and such to build stronger patient communities and get the relevant information out there to either patients or caregivers and then helping them help themselves. "Now if we look at the future we are at the cusp of having a lot of this technology work its way into the healthcare sector – such as machine learning or wearable devices. They're now starting to get closer to actually having relevancy in healthcare beyond just a gadget or something gimmicky. 

 "But if we're just collecting all this data and serving it up to the patient and saying, 'Now you're empowered', that's not really doing anything. Saying you took 12,000 steps yesterday is not really empowering you, but if you can translate that into insight and get a sense of prediction because of it – for example giving them a small suggestion of something they can do to actually change their health outcomes for the better – then we're actually talking about true patient empowerment." 

He adds: "The ideal empowered patient essentially means a whole series of sensors on them so that certain chronic diseases can be predicted days out of them having an exacerbation, and suggestions can be made to them on what to eat or what activities to undertake. This fundamentally does change the role of a national health system because what it means to administer care is quite different then, and the ways in which it's reimbursed or paid for are also quite different." 

Mobile assistance 

One example of an app belonging to this trend is OWise, for breast cancer patients, created by Anne Bruinvels, who got the idea when working as executive director of the European Personalised Medicine association. 

"I found out that there are a lot of reasons why the novel diagnostic tools and personalised drugs have difficulty getting into the patients' hands and actually having an impact on patients' lives," she says. "There are lot of hurdles at the level of policy, regulatory and also reimbursement. I thought there is a huge resource we're not working with at all – the patient. "We need to start to supporting patients, giving them the right information for their particular situation. Breast cancer was a very obvious disease to focus on because what was essentially the first personalised drug, Herceptin, was developed for breast cancer." OWise is a tool to provide people with personalised medical support throughout their treatment. In addition to offering patients personalised medical information, it also offers tracking tools that enable patients to record their treatment experiences, side effects and overall quality of life, among other features. The aim is to make personalised treatment easier and more effective, allowing changes in levels of pain, sickness and fatigue to be easily captured and shared with healthcare professionals, who can then use the data that patients record in the app to inform decisions on treatment options. "We felt it was important to see how patients respond to treatments," says Bruinvels. "Patient-reported outcome data is becoming more and more important, so there are lots of tools in the app to help with that. There's audio recording to help people remember what was said in doctor's consultations. There are glossaries and tailor-made question lists as well. There are lots of tools that patients can use to track how they actually feel, and we can respond back to patients and tell them how they can feel better." 

When it was initially launched in the Netherlands in 2013, an independent study showed that nine out of 10 clinicians recommend OWise to their breast cancer patients. "They essentially said that patients are much more at ease when they come to these doctors," says Bruinvels. "At the same time they seem to be better informed and we can actually have a better dialogue with them, we can have a discussion about the type of treatment they want to receive and should get. 

"One advanced breast cancer patient told us that her doctor said she shouldn't go back to work, but she really wanted to. So she used OWise to gauge what she could do and couldn't do on a given day. With the app she was able to go back to 10 hours a week at work, and lately she told we me it was going so well she was looking at going back to 20 hours a week. Tools like this help patients start having what they would call a normal life again. That's what they always say they want from the beginning." 

Online records 

Meanwhile, online medical records system Patients Know Best (PKB) is aiming to put patients' medical information directly in their hands. PKB allows patients to access their own records at any time and share them with any health professional, and is currently taking the healthcare world by storm, with a slew of awards to its name and a growing user base across the country. 

"Today, where all of our information is available to us, healthcare is the only area where your own information is not available at the push of a button," says PKB's vice-president of business development, Lloyd Humphreys. "Patients need to become active members of their own health and care, and we need to involve everybody in their network." 

He says that PKB overcomes a lot of the problems that healthcare providers currently face in terms of sharing information about a patient across different organisations or different geographies. "Anyone with an account is able to walk into any healthcare organisation, whether that organisation actively uses PKB or not, and invite a professional in to see their record via email. They can not only see that information that's come from all the different places the patient has visited, but they're also able to communicate directly with those professionals. 

"A nice example is a patient who was on a Caribbean cruise, who had a flare-up in her Crohn's and needed treatment immediately," says Humphreys. "She walked into the local hospital, invited the professional into PKB and connected that professional with a consultant at Luton and Dunstable. They were able to coordinate the treatment, prescribe the right medication, and that patient was able to get back on the boat and carry on with her cruise. That's the simplicity of being able to coordinate across geographies." 

This can be particularly useful for rare diseases, as Humphreys emphasises with the example of children with short bowel syndrome at Great Ormond Street Hospital, where PKB got started. "These are very rare, very complicated patients, and when they're discharged from Great Ormond Street they go back to their local GPs and their local hospital, who don't really know how to deal with them. If their parents use PKB it means that when she turns up to the emergency room the doctor can act on the information held in the medical records because it has come direct from Great Ormond Street. 

"Instigating cultural change has been a challenge. Patient ownership of information is a relatively new phenomenon, and yet it now permeates every sort of policy, from the Five Year Forward View to Personalised Health and Care 2020. What we wanted to do was actually look at how we shift the culture from a patriarchal model of healthcare delivery – as the doctor says, the patient does – to a much more collaborative approach where both the patient and the doctor are working together around shared information and collaborating around one record. It requires a mindset shift for both doctors and patients; that patriarchal model has been propagated by both groups." 

Pharma's role 

The effects of this shift in medical practice will inevitably be felt by pharma. 

"I don't actually see that our role really changes as a sector," says White. "We're still trying to help patients get better and this is just a new way of achieving that. But it does raise questions about what we are producing, what innovation looks like, how we get reimbursed for it, and how we get it through regulatory pathways." 

But there are plenty of opportunities for pharma companies to get involved. For example, Teva is working with the NHS on the Test Bed project in Sheffield, providing its disease management platform, CareTRx – which comprises a hardware sensor that connects to a metered dose inhaler, a data analytics software platform, and a mobile app-based interface. It works in the background to link patients to healthcare professionals at remote locations, who monitor patients as they use their smart inhaler, provide real-time support to ensure they're complying with their treatment plan, and promote patient engagement. 

There are, however, several pitfalls that pharma needs to be wary of. 

"Patients don't necessarily want to be reminded that they have a disease," says White. "There's the caveat that while you want to empower them they don't want to be very actively engaging with it, what they want is information that can make their disease transparent and not a burden on their lives. In our sector we always have to take a step back. Every day we are focused on the disease state we're trying to help and the patient we're trying to support, but this isn't necessarily something that patients want." 

Organisations also need to understand that patients themselves are not medical professionals. 

"We need to get to a point that the information that is served up or the actions that are encouraged to patients are done in a way that is easy to understand, that is not going to be confusing, overwhelming or stress inducing, so it's very different from the past where we could communicate mostly with HCPs who understand the full world of medicine."

White adds: "We also have to remember that this is people's health. There's a reason we're as regulated as we are. If this is not done properly you can actually put a lot of things at risk including the patient's life. We need to go into it understanding that this probably won't be disruptive as quickly as other sectors moving in this direction, but it still leads to a brighter future." 