State of patient centricity 2020: Advancing from patient-first intentions to true co-creation

May 29, 2020


State of patient centricity 2020: Advancing from patient-first intentions to true co-creation

May 29, 2020

Emily Wasik

Senior editor

Based across three continents – in NYC, Berlin, London, and Brisbane, Australia – Emily has spent the past 14 years working as an editorial lead, intelligence consultant, research analyst, journalist and trend forecaster. She has worked for global media powerhouses from the likes of Huffington Post and VICE Media to business intelligence firms and innovation labs like PSFK and KKLD to Fortune 500 companies from Coca Cola to MINI.

Emily specialises in identifying white space opportunities, finding the stories worth telling, and creating a heightened level of awareness about how the world is changing and the opportunities to be seized. She has presented at various conferences around the world and used to be the host of her own creative intelligence podcast.

At Economist Impact, she has led various research programs – from conception to creation and cross-platform execution – across innovation, tech, healthcare, workforce, education and sustainability, and the pivotal nexus where all these things intersect.

Emily studied interdisciplinary creativity (journalism, public relations, marketing and creative writing) at Queensland University of Technology, and international business (minoring in economics and anthropology) at Rensselaer Polytechnic Institute. She can speak fluent German and has spent 12 years learning Japanese.

Patient centricity is a near-universal goal in pharmaceutical research and development, but one without a commonly accepted definition. The challenge now is putting it into practice and understanding its impact on clinical trials. This Economist Intelligence Unit study, sponsored by Medidata, draws on insights from patient advocates, leading pharmaceutical and clinical research industry executives and extensive desk research. It examines the current state of patient centricity within clinical trials and how this is likely to evolve as researchers move from patient centric initiatives to true co-creation with patients. Its key findings include:

  • The benefits of patient centricity are starting to become clear.
    Although comprehensive data on the impact of patient centricity on drug development is still unavailable, the existing information points to substantial benefits. To cite just one example, The Economist Intelligence Unit compared 4,000 clinical trials with significant patient-centred elements with 20,000 traditional trials (all were run between 2012 and 2017). Of the patient-centred trials, 87% had positive results, a much higher rate than 68% of traditional trials.
  • While significant efforts to advance patient centricity have occurred, practical and intellectual gaps remain between the reality and the kind of research and development co-creation that is intrinsic to true patient centricity.
    In the varying definitions of patient centricity, one theme appears consistently: the need to recognise the status and expertise of patients, families and caregivers as co-creators of healthcare. Processes and mechanisms that enable them to exercise that power must be integrated into health systems. Patient advocates interviewed for this study recognise that trial sponsors and operators have made great strides in implementing patient-centred initiatives but tend to fall short of creating true partnerships. In fact, Emily Kramer-Golinkoff—co-founder of non-profit cystic fibrosis research foundation Emily’s Entourage and a cystic fibrosis patient herself—reports that many researchers are only now meeting patients for the first time.

    This kind of partnership has any number of advantages, including expertise on unmet patient needs, connections with possible trial participants and convening power with other stakeholders which companies do not possess. Just as importantly, notes Craig Lipset, founder of Clinical Innovation Partners and former head of clinical innovation at Pfizer, patients themselves are starting to fund and run their own clinical trials. Companies need to respect their capacity to act on their own if relationships with industry are not delivering what patients want.
  • Meaningful partnerships require two-way communication, company-wide patient engagement and advanced job requirements.
    There’s a stark difference between companies that use patient engagement as a one-off exercise to get input for specific projects and those that consistently work with patients to better understand their needs and co-create solutions. Too often have engagement initiatives largely resided in a siloed department or job function. Takeda provides an example of how building engagement into research and development job requirements can, relatively quickly, lead to valuable co-creation.
  • Companies which have established relationships are learning that they must plan trials with patients, not just with them in mind.
    One of the areas in which the industry has made great progress is the use of advisory boards for clinical trials. The problem arises when even well-meaning companies use them in a limited way. Two examples of companies taking engagement with patients further in this area are GlaxoSmithKline and Eli Lilly. The former works with its client council in an iterative way to repeatedly adjust draft trial protocols rather than getting a single round of input. Meanwhile, Eli Lilly’s CoLab and CoDesign programmes take patients through day-long dress rehearsals of how a trial will work in order to spot any weakness or opportunities for improvement. CoLab was a key contributor to Eli Lilly’s reduction of average trial enrolment time from four years down to three, and tightened the gap between first patient dose and product launch from ten years to eight-and-a-half.
  • A plethora of new IT tools are being applied to trials, but getting full value from them will require the restructuring of trials with and around patients.
    New information technology (IT) enabled tools have already started to revolutionise clinical trials and look set to go much further. Electronic devices for clinical outcome assessment, patient reported outcomes and remote measurement have already become common and the use of wearables is expanding rapidly. Meanwhile, pre-trial social media recruitment and the use of electronic informed consent tools are realistic options. This expanded use of IT, however, will only reach its full potential if those running trials work effectively with patients. Clinicians need to understand what kinds of technology patients are comfortable with and the extent to which they want to engage with the process of reshaping clinical trials.
    • Companies must understand patients’ technology preferences to meet them at their preferred touchpoints.
      Patients are not a monolithic group, nor do they all want to use the same technology. To cite just one example, a recent study found that older individuals respond better to Facebook advertisements of clinical trials than do younger ones,3 which has different implications depending on the demographics being sought for a trial. Another central issue is when it might be preferable to let patients use their own smartphones, which so far seems to lead to more active reporting.
    • Companies cannot just apply technology to elements of the traditional trial: they must rethink the way trials are run.
      The most effective use of technology requires not so much doing old things more quickly but doing things in a new way. The growing use of IT allows trials to be rethought around the patient in any number of important ways. Global pharmaceutical company Takeda, for example, is looking at using enhanced data gathering to create a metric for the burden put on patients by trials. Remote sensing equipment holds out the possibility that participants will not need to travel to clinical research centres, something which a recent survey indicated that patients would prefer by a ratio of 10 to 1. The experience of keeping trials going during the covid-19 pandemic will accelerate progress in this direction. Looking ahead, patient advocate and metastatic melanoma survivor T J Sharpe expects that it will become increasingly possible to customise the trial experience around individual patient needs and preferences.
  • Looking to the future, the biggest change—and the one where progress has been slowest—will be the need for organisations to run trials for the patient’s benefit as well as the sponsor’s.
    A logical implication of a truly equal partnership between patients and clinical trial administrators is that each side can use the resultant data for its own purposes. Ensuring that patients gain value from trials might even help with the industry’s ongoing recruitment challenges, especially among under-represented groups. For example, some companies are giving patients the personal data collected and used within trials. In some cases sharing this information can greatly benefit patients in ways unconnected to the drug being studied. The industry will no doubt evolve beyond information sharing toward a greater “convergence of clinical care and clinical research,” says Ken Getz, deputy director and research professor at Tufts Center for the Study of Drug Development (CSDD).




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