Understanding the person behind the patient is a crucial part of medicine, one that healthcare providers can use to improve the efficacy of treatments. At the 2021 Frontiers Health conference in Milan, Mark Duman and Paul Tunnah discuss the importance of co-creating with patients.
Over the past 50-years, demand for patient and public involvement in the development of new therapeutics has soared as patients grew more aware of and informed about their health. With their unique real-world insight into their healthcare experience, patients have a lot to offer when it comes to developing new treatments.
While patients may be willing and waiting to be included in the development of therapeutics, for many companies, this valuable asset remains an untapped opportunity. Unfortunately, this has created a deep divide between what patients need from new treatments and the products companies develop and market to them.
This divide was a key topic at the 2021 Frontiers Health conference in Milan, where MD Healthcare’s chief patient officer Mark Duman and chief content officer & managing director UK Healthware Group, Paul Tunnah, showcased why healthcare companies should be working to engage the person behind the patient and incorporate their insight and experience to develop mutually beneficial treatments.
As Duman puts it, “trying to change healthcare’s focus from what is the matter with you, to what matters to you”.
Modern healthcare is complex. For patients, this complexity can increase the burden caused by the illness they are battling as they struggle to understand and access the proper treatment to address their needs.
“It’s very easy to forget that patients are not a single homogenous group,” says Tunnah. “There are all kinds of different patients from very health illiterate to very health literate and everything in between.”
Under the old old-size-fits-all model of pharma development, companies would identify an unmet need, which would undergo molecular analysis before being released on the market. In this environment, patients did not enter the equation until the later stages of development.
“We need to understand where our biases are, and we need to adjust for them accordingly, both in trials and in delivery of medicines,” explains Duman. “If you ask the average clinician in the UK what they know about the patients that they’re dealing with, what do we sometimes know when we’ve collected data, is we’ll know their past medical history, and we’ll know their current medication.”
While this is essential information for the clinician, there are elements underneath this surface-level understanding that significantly affect the patient experience. Financial and living situations, for example, can impact adherence as a drug that must be refrigerated will be unsuitable for a person with no access to a fridge.
Listening, Duman emphasises, is the key to identifying these details.
“I think it’s absolutely key for us to go out and listen to patient stories,” he says. “Go and listen in your therapy area and other therapy areas. You will be amazed by some of the stories that you hear there.”
By interacting and engaging patients on a personal level, clinicians can foster a more positive relationship, one where patients feel more valued and heard. But, for patient engagement efforts to be truly beneficial for both patients and healthcare providers, it is vital that any steps put in place do not come across as tokenistic. For Duman, this is where co-creation is key.
“Co-creation is really important across the entire value chain,” he says. “Whether it’s deciding you want a patient support programme, looking at surveys, post-marketing surveillance, or embracing digital health. We should really be co-creating these solutions with our patients and with our caregivers.”
Clinical development often takes place in a bubble, where clinicians focus on one specific area, which can ultimately result in a product that does little to address real patient needs.
“As a pharmacist, I spent many years thinking about X, where X was a medicine,” says Duman. “What we sometimes fail to see is the other side of the spectrum.”
The “we make X” mindset has facilitated an environment where patients are forced to compromise to suit a treatment rather than having a treatment that directly addresses the needs and concerns of patients. As a result, patients are less likely to adhere to medication schedules. This is a situation that benefits neither companies nor patients.
Working in partnership with patients can be highly advantageous when it comes to the costly and time-consuming task of developing new treatments. Patients are uniquely positioned to provide invaluable insight into how symptoms and treatments behave outside of the clinical setting. This real-world information cannot be created by research confined to a laboratory.
For Duman, this cultural shift towards collaboration where companies develop with patients instead of for them could also help to improve adherence, as including the end-used early on in the research process can help to prevent unforeseen issues later on in the development process.
“Insight and that co-creation are absolutely fundamental to the process,” he says. “Not us sitting in our ivory towers deciding what the best thing is for our patients.”
He spotlights insulin delivery as a notable example. Theoretically, prescribing multiple insulin injections addresses the symptoms that a patient may be experiencing. But, if you look at this from the patient perspective, repeatedly injecting yourself with a drug every day is a cumbersome and unpleasant experience.
“In the industry and digital health, we need to be thinking about the impact that medicines have,” he explains. “Now we’re beginning to understand why maybe 50% of patients don’t take the medicines as prescribed.”
Understanding this difference in perspective can help companies identify why patients are reluctant to engage with new digital platforms or products.
“It’s because he, or she, wants to be a whole person,” says Duman. “They don’t want to be reminded that they are a patient on a daily basis.”
“We need to think about patient innovators and patient innovation,” he continues. “Stop defining the healthcare system by clinical unmet need. It needs to come from quality-of-life and patients’ unmet need.”
Transitioning to this new model of engagement will not happen overnight. However, to truly enact meaningful change, companies must first take stock of their current levels of engagement across all aspects of the business.
“It’s a 360-degree view based on internal and external,” says Tunnah. “Not just the people whose job it is to do patient engagement, but everybody.”
Understanding areas of opportunity for patient engagement is a critical step in the process. Through their work as consultants, both Duman and Tunnah have first-hand experience of how a robust reflection process can help to inform future engagement strategies that benefit both companies and patients.
“Every company is well-intentioned with patient engagement, says Tunnah. “I think the bottom line is there is a gap between a good medicine or a good device and a good outcome. That gap is driven by what’s going on with the patient. What you don’t understand about the patient can really hurt you.”
As with patients, viewing the company as a whole entity opens up new avenues for engagement that previously may have been lost in a fragmented and siloed engagement model. Not only can this open up channels for collaboration between departments, but it also ensures that patients receive consistent information by reducing the risk of confusion.
As Duman explains, “If we don’t have the same definitions, if your patient engagement is different from my definition of patient engagement, then no matter what we do, we’re not really going to come to common ground.”
Amid a wave of digital transformation across healthcare, healthcare providers have unprecedented access to patients. It is a prime opportunity to drive a more collaborative patient experience, one where patients are not just seen but truly heard.
“If we were to give patients information, education and methods to self-care, then we’re beginning to see a system that hopefully enables them to look after themselves as opposed to relying on the system,” concludes Duman. “That means us positioning information as a therapy, not as a nice to have, but as a must-have, that is integrated into healthcare delivery.
Mark Duman MRPharmS brings over 30 years of clinician, management consultant and patient perspectives to the healthcare, life sciences and digital health sectors.
As the Chief Patient Officer for MD Healthcare, he works with organisations such as AstraZeneca, Diabetes UK, Google Health, JnJ, Macmillan Cancer Support, Microsoft, the NHS, Pfizer, Novartis & Siemens Healthineers to harness digital health, develop markets and improve patient engagement. In short, to make healthcare more person-centric.
Dr Paul Tunnah is chief content officer and UK managing director for Healthware Group. Prior to this, he founded pharmaphorum in 2009, which was acquired by Healthware Group in June 2020. He is a recognised author, speaker and industry advisor with a passion for helping organisations tell authentic stories that resonate, co-create solutions and unlock the power of digital and social media in connecting with customers and understanding markets. Dr Tunnah holds a BA in Biochemistry and DPhil in Biological Sciences from Oxford University.