“How are you? I’m fine, thanks.”
How often do we all have conversations like this? Where we leave things unsaid, perhaps because we think the other person doesn’t want to really hear it, or maybe we are a bit embarrassed to admit the truth?
It happens in our personal life, and in doctor-patient conversations, all the time. Either things are left unsaid, or things that are said are misunderstood. Experts have suggested this is because doctors and patients talk to each other with different voices – the voice of medicine is characterised by medical terminology, whereas the voice of the patient is characterised by subjective experience of their illness.
With a complex disease like
So how can we change the status quo? Communication challenges are consistently flagged as a concern by both the IBD patient and treating physician alike. “We wanted to find a way to help doctors and patients to bridge the gap and ensure they are talking about the same things, such as IBD causes or symptoms. For example, what do we mean when we say “flare”? For physicians, it means a significant inflammatory event. For a patient, it may mean a day they ate things that meant they had to go many times to the bathroom. We need to find a way to come to a common understanding,” says Amanda R. Tatro, Group Global Scientific Director at Roche.
It is not just differences in language and semantics that cause problems between doctors and patients, but also their different perspectives and how each views the different outcomes in IBD. For example, the main goal of IBD management from a doctor’s perspective might be to control the underlying disease in order to help patients in the long-term. But for the IBD patient, aspects of daily life which many of us often take for granted are also very important, whether it’s simply having more energy than the day before, or being able to go to work or school.
These are things that matter to people and we are aware that it is important to find a way to consistently measure their impact on people’s lives.
This is where patient-reported outcomes (PROs) come in. PROs are health outcomes – such as symptoms of a condition or side effects of a treatment – that are directly reported by the patient who experienced them. PROs are gathered using standardised questionnaires filled out by the patient, rather than their doctor or nurse.
Amanda explains further: “PROs can help to better understand how a patient is experiencing their disease, and in turn allow the physician to be more proactive regarding their patient’s care. Albeit subjective, they represent a structured set of information that complements clinical assessments; provides doctors with a more holistic view of their patients, and helps to bridge the communication gap between doctor and patient.”
With the help of IBD patients and physicians, Roche has been developing and validating IBD-specific electronic Patient Reported Outcomes questionnaires (ePROs) in collaboration with Dr Peter Higgins at the University of Michigan in the USA, and an IBD Consortium, along with additional input from regulatory agencies (i.e. the FDA and EMA).
Together with its IBD research partners, Roche has now helped to develop two ePRO tools - one for ulcerative colitis and one for Crohn’s disease. Both tools are being used in clinical trials and are on the way to becoming the first and only FDA-qualified ePRO tools in IBD.
These PRO questionnaires can be deployed prior to a doctor visit to help the patient and doctor focus on the issues that matter most.
“The doctor doesn’t have to ask 30 questions to reach an accurate picture because it’s already there in front of them,” says Dr. Higgins. “Both the physicians and patients love the idea of going in and having all that information already there. It makes their life so much easier.”
However, while PROs are being used more widely in pharmaceutical clinical trials, they are not being utilised widely outside of that setting. “The challenge has been finding a validated, systematic way to collect patient-reported outcomes and integrate those into the care pathway in a meaningful way,” explains Amanda.
But the huge advances in information collection methodologies and in digital innovation in general that we have seen in recent years are changing all that.
“Digital technology has been the key to unlocking the potential of PROs in day-to-day care,” says Iliàs Charlafti, Group Leader Digital Health at Roche. “Using digital technologies, such as smartphone sensors, mobile health apps or advanced analytics like artificial intelligence, information can be collected, reviewed and analysed quickly and easily, and turned into meaningful insights that doctors can use to tailor treatment and care for each of their patients.”
Understanding that unlocking the potential of digital technology to transform IBD care requires strong partnerships, Roche entered a
The first initiative coming out of this partnership is focused on utilising real-world evidence through mobile health applications to improve health outcomes in people living with IBD.
“It is a very exciting initiative that will enable patients to input the symptoms they are feeling directly into a digital device, as they are experiencing them or shortly after. This means an accurate log of symptoms is fed directly into the care pathway of the patient,” explains Amanda. “Physicians will eventually be able to see – and act on – the very latest information submitted by their patients in a very smart way without spending any more time.”
“We're using ulcerative colitis PROs and Crohn’s disease PROs with patients before they come to clinic. I have the information the patient shared with me before I see them. I no longer have to be a detective at each visit and we can focus on how to address their needs," says Dr. Higgins.
The integration of this PRO information into patients’ health records is vital to ensuring it is considered by physicians when treating their patients – rather than gathering patient information through a variety of sources. It is also important that there is one consistent, easy-to-use way for patients to input their data for clinics. The
“The integration of PRO information into electronic health records (EHRs) is only the beginning,” says Iliàs. EHRs are databases that consolidate patients’ health-related data such as their latest lab results and track important information such as their medication and hospitalisation history. These help medical professionals and patients manage disease more effectively. “In the long-term, we believe that the quality of care provided to people with IBD – and other conditions for that matter – will improve significantly through the digitisation, automation and inter-connection of healthcare services as well as the integration of digital health data with EHRs. More targeted care translates into improved health outcomes for patients and more efficient care delivery.”
All of which may help physicians and patients have more productive and meaningful conversations that lead to better health outcomes.
“How are you?”
“I’m fine, thanks.”
“Let’s talk about the symptoms you have been reporting recently, you mentioned having severe pain in your belly this past month…”
Swati Tole, Senior Group Medical Director, Genentech, a member of the Roche Group, explains the challenges around treating ulcerative colitis and Crohn’s disease and how Roche’s vision for personalised healthcare in IBD could contribute to better outcomes for patients.
Our CEO Severin Schwan explains the growing importance and impact of data in the development of new medicines and shares examples of how data helps to increase the patient benefit.
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