The trouble is, when it comes to turning these impassioned ideas into actionable progress, patient centricity has generally been limited to commercial teams. Moreover, while the vocal support for such inclusive measures is strong, true strategic support and economic drivers have been somewhat lacking when it comes to giving patients a seat at the table.
However, this does appear to be rapidly changing. As patients grow more aware and informed about their healthcare decisions, they are taking an increasingly proactive role in the development and focus of their treatment. Advancements in technology have facilitated access to a wealth of previously untapped information on how diseases, symptoms, and treatments behave outside of traditional clinical settings.
Demand for more patient involvement has also started to inform regulatory processes, making it increasingly important for life science companies to incorporate the patient voice in product development.
As we approach a crucial point in the journey towards patient centricity, it is time to start turning the promise of inclusion into a reality.
“Patient centricity has to start at early clinical development, move all the way through R&D, and then the body of longitudinal evidence will be right there when we’re trying to understand better strategies for market access,” explains Evidation co-founder Mikki Nasch. “The voice of the patient needs to be heard in that arena more than anywhere else because that’s where you’re going to influence the way that payers are going to view your products.”
In the past, this left lengthy blank pages in our understanding of the true patient experience. This was just a fact of life; we had no way of accurately measuring or monitoring what happened during this between-care period. Thanks to the advent of advanced digital technologies and data analytics capabilities, that no longer needs to be the case.
As Nasch notes: “There is so much information that’s happening between care and we’ve obviously seen the rise of real-world data in terms of wearables, apps, and tracking systems where patients can input what’s happening to them between visits.”
With access to a wide array of real-time information about treatment performance, side effects, and symptom severity, as well as contextual information about the patient’s lifestyle and potential external influencers, physicians can now see beyond the symptoms of disease to the full human being behind them.
Between-care data can be collected through a variety of sources, such as wearables, digital apps, and electronic health records. Using these resources, physicians can monitor the progress of a patient or therapy over an extended period of days, months, or even years. But, for Nasch, collecting data is just the first piece of the puzzle. Here – as with the full patient experience – context is key.
“When we think of the data streams that get collected, it is really important to annotate that data,” she explains. “I may only go once every three months to a physician for my chronic disease updates. The 90 days between visits are variable, there’s seasonality, and there are all the things that could possibly create different data effects. If we don’t check in occasionally with that patient and annotate all of their streaming data with what’s going on, the data itself becomes a little less valuable.”
For Nasch, answering this desire to be seen and valued should be a priority in the drive for patient partnership: “When you think of research as: ‘I, the researcher, come in, expect everything from you and then there’s going to be a black hole while I go through the regulatory process’, that model doesn’t work. It’s very important for patients to feel not only that they’ve been heard, but that they’re getting something of value back from sharing the input.”
Beyond inclusion, championing the patient voice and partnering with them from an early stage, all the way through development, can provide additional benefits for companies beyond market launch. If an engaged individual values a product, their position of trust as a patient makes them well-placed to become an advocate for it.
“You have to add that value and you have to add that trust,” explains Nasch “You need to activate patients so that they activate their physicians. In healthcare, we’ve never had to do that because it was thought: ‘You’re going to trust your doctor, they’re going to tell you to take a specific course of action, and everything’s going to be fine’, but that’s not true anymore.”
Developing trust takes time and patience, but in healthcare, there is one particular element that should be a key consideration: respect. Patients have full, complex lives outside of the clinical setting, so overloading them with requests for information can add to their burden. This is where solutions such as technology-enabled quarantine could play an important role.
Whereas traditionally siloed departments (e.g., clinical research and market research) may have maintained separate patient registries, without any bridge between those functions or integration of the different channels, companies ran the risk of overlapping and overloading patients.
“There is a legal requirement to ensure that if a patient is in a medical study, they’re not doing market research. This is a big barrier that at times is thrown up as to why companies must have two different registries,” says Nasch.
However, with a single firewalled and annotated registry, users would be able to tag patient files with notes that denote their eligibility, or unavailability for market requests.
“With their permission, we tag people,” explains Nasch. “If they’re in a medical study, we can tag them with an experiment tag that says, until the completion of the study, say for 90 days, this person is not available for any market research requests.”
“You’ve effectively created a firewall that solves for the legal requirements without ever having to break the relationship with a patient.”
Trust is a significant challenge when it comes to data. Data privacy has been a growing issue in public discourse, exacerbated by high profile examples of data misuse and breaches of security. These instances are few and far between, with great efforts being made to ensure that data is only used for the agreed purpose.
“When we’re dealing with this data, we have to be front and centre that what we are doing is for the benefit of the patient,” she notes. “These are measures that matter to the patient, and if they choose to withdraw at any point, they should be able to. If they choose not to share information, they should be able to. That level of choice over what happens with their information, and follow-through by the company holding or using the data, is critical to gaining their trust.”
Another prominent barrier highlighted by Nasch is willpower. Changing your behaviour or working patterns is not easy, especially when you have multiple stakeholders relying on stability and results. Moving away from the siloed environment that has been created around patient registries is a notable example of this.
“Firewalls between functional areas in pharma create duplicate purchasing of the same patient access and insights,” she says. “We’re getting to the stage now where everybody’s starting to look at cost-cutting and cost containment. It’s the right time to actually rethink these engagement strategies, and technology can help address the regulatory requirements, so it may no longer be necessary to have three or more patient registries for the same therapeutic area.”
“When we think of patient centricity, we need to disconnect it a little bit from the patient services model and shift it into fully integrated engagement through the full product lifecycle, so the patient’s voice is heard at every step,” says Nasch.
Demonstrating value is a key example of how this could work in practice. With the aid of between-care evidence garnered from patients, pharma and biotech companies can have recorded proof as to whether a treatment meets the patients’ needs and how it impacts their own personal experience. In this scenario, the absence of the patients’ voice would put companies at a disadvantage, cutting off an important resource to inform strategic decision-making.
“It’s the three-legged stool analogy,” explains Nasch. “If value-based payments are ever to be fair, then all three entities have to be at the table. You need the patient, you need the healthcare professional, and you need pharma. We can’t build a risk model with one-third of the risk not at the table. It doesn’t work. It is not achievable without the patient at the table.”
Mikki Nasch is the co-founder and SVP of Commercial at Evidation, responsible for revenue and strategic business development. Prior to co-founding Evidation, she was the EVP of Business Development for Sense Networks, a pioneering machine learning company founded by leading scientists at MIT and Columbia. She has held executive roles at Fair Isaac and leadership positions in the incubation phase of numerous start-ups. A serial technology entrepreneur, Nasch was part of the founding team of Backweb Technologies and managed business development projects at AT&T Business Network, Europe Online, and Reuters. She is on the Advisory Committee for Goergen Institute for Data Science at the University of Rochester.
Evidation measures health in everyday life and enables anyone to participate in ground-breaking research and health programmes. Built upon a foundation of user privacy and control over permissioned health data, Evidation is trusted by millions of individuals – generating data with unprecedented speed, scale, and rigour. We partner with leading healthcare companies to understand health and disease outside the clinic walls.
Guided by our mission to enable and empower everyone to participate in better health outcomes, Evidation is working to bring people individualised, proactive, and accessible healthcare faster. Founded in 2012, Evidation is headquartered in California with additional offices around the globe. To learn more, visit evidation.com, email us at email@example.com, or follow us on Twitter @evidation.