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33 LIFESCIENCELEADER.COM NOVEMBER 2014 Celebrating 25 Years Improving Patient Outcomes and Reducing the Cost of Care by Taking Noninvasive Monitoring to New Sites and Applications. www.masimo.com of the patient-centered tactic is to invite a patient to 'the table' — to a conference or to an ad board." While this is a big step, the PatientsLikeMe team cautions to avoid the temptation of racing to cre- ate a solution to your patient-engagement problem before thoroughly considering the various challenges and how best to overcome them. DON'T LEAP BEFORE YOU LOOK One of the most basic challenges when engaging with patients is, "How does a human being know what to do in an infor- mation age?" asks Jamie. "The question can be as simple as for the headache I have right now, 'What's the best way to treat it?' Even though these drugs have been used by hundreds of billions of peo- ple, we have no idea what the answer to that question is." According to Jamie, there is a limit to the number of variables a human, as a heuristic engine, can pro- cess to reach an effective conclusion. In other words, before you invite patients to the table, understand the questions you need to ask them so you are collecting the right data. For example, consider the proxy measures of healthcare, which look at readmission rates or hospital acquired infections. "The core measures are falls or bedsores," says Coulter. "These don't really get to the nature of the underlying condi- tion." If you want to better understand the outcome, start by measuring the experi- ence of the process that led the patient to the outcome. Regarding clinical trials, Ben adds, "Patient reported outcome [PRO] measures are typically designed in the context of doing research and understand- ing an end point, as opposed to having a patient-centered view of an enabling self- measurement and self-disease manage- ment." If you want to develop better end points, you need to meet the challenge of understanding what matters to the patient during their disease journey. Another challenge to consider is that consumers are increasingly looking for, and have been given, control in their lives. "From how we order a taxi to how we reserve our next hotel stay, consumers are increasingly looking for data, referrals, and input from the crowd," says Coulter. But during or after the clinical trial, par- ticipants aren't usually given much access to the data. According to Jamie, "In the highly regimented and rigorous field of clinical research, your currency is build- ing a population of patients, separating them into two different groups, conduct- ing research, and collecting data from which you can then publish articles." As data and publication are what clinical researchers perceive as valuable, Jamie believes this encourages researchers to