Personalized Medicine and Patient-Centric Learning: A Core Requirement for Informed Decision Making

MaryRose Barranco Morris; Brian Morris

Disclosures

Personalized Medicine. 2008;5(3):265-271. 

In This Article

Personalized Medicine Consumer Benefits or Challenges

Michael Castellano, MD, is a pulmonary doctor; in fact, he is the Director of Pulmonary Medicine at one of New York City's largest hospitals, a teaching hospital. Through most of the day, that's what he does - teaches in conferences and at the bedsides of patients.

On a particular day, surrounded by an assortment of resident doctors, interns and advanced practice nurses, he asks them questions as they study the chart of a burly, smiling patient. Rapidly, he asks:

  • "The results of the latest series of tests?"

  • "Do they confirm the early diagnosis?"

  • "Is he responding to treatment?"

  • "What was the last ruling family in Czarist Russia?"

The first three questions were answered and confirmed. The last question was met with utter and uncomfortable surprise, as the training medical personnel looked at each other, hoping someone had an answer for this unexpected query.

Dr Castellano did not hide his disdain. "The patient's name is on the chart," he said sternly. "He's not simply a patient. He's not simply a collection of diseases, disorders, aches and pains. He's a person. He has hopes and dreams, feelings; he shares a culture that's rich in history and tradition." And, certainly, the chart revealed a Russian surname.

Dr Castellano thanked the patient for allowing the intrusion at his bedside. He smiled as he revealed the answer to the fourth question: 'It was the Romanoffs'. His raised eyebrows gave the patient the opportunity to confirm the answer. And he did, with a wide, gap-toothed smile.

Later, Dr Castellano, who's been involved with teaching rounds for more than 20 years, explained, "The toughest part has always been to get residents to pay attention to the humanity of the people they treat. I've trained some very, very talented doctors who are able to combine their skills, knowledge and intuition. But, it's equally important to recognize that this is a person in front of you. Talk to him. And listen to what he is telling you. He can be a wonderful and comprehensive guide through the ailments that he is experiencing."

While Dr Castellano's experiences training young doctors may be repeated dozens of times a day throughout all the nation's teaching hospitals, he, perhaps, is questioning what motivates people to enter the medical profession, and what they learn as they pursue the long and rigorous years it takes to obtain their credentials. Most learn the science; that's how they're tested. How many learn the art of medicine? How many will be able to transmit useful medical detail to their patients? How many understand the variety of ways patients learn and the important role the physician plays as a critical agent in this learning?.[1,101]

Although patients may be fascinated by the science of medicine, most will have a tough time grasping the most rudimentary art of medicine as it affects diseases, disorders and conditions that they are experiencing. Afflicted by diabetes, for example, a patient's understanding of the endocrine processes will likely be beyond his appreciation. How do patients learn more deeply about their bio-individual predictive and preventive health and managing their care?

Medicine is approaching a new era of personalized medicine, a simple enough term that so far has defied universal definition. Personalized medicine is 'any of the ways in which understanding meaningful differences between individuals helps guide the use and interpretation of diagnoses, as well as choice in therapies and prevention'.[2]

According to the US FDA, 'personalized medicine is based on pharmacogenomics, the science that allows researchers to predict the probability of a drug response based on a person's genetic makeup'.[3]

'The concept of personalized medicine or targeted therapies seems simple, yet few can agree on a precise definition. In fact, many clinicians take exception to the term itself, stating that modern medicine has always been personalized, and point to the fact that they are already using detailed clinical characteristics and other phenotypic information, including biomarkers, to predict the early onset of disease and stratify patients into severity and treatment subtypes. Others counter that in this age of high-volume, time-constrained physician practices, it is, indeed, time to re-personalize medicine'.[2]

'Technological innovation in genetics, genomics, stem cell research, cloning and other technological advances have the potential to transform the human landscape from extending lives to changing the nature of the food we eat'.[4]

Doctors will retain their critical roles as healers, while adopting expanded roles as teachers. In other words, from the perspective of those who understand the challenges of lifelong learning, personalized medicine will encompass awareness, understanding and learning - on the part of the physician, and then on the part of the patient. Are medical practitioners and their teams prepared to proactively engage in ongoing dialogs with patients to co-create knowledge that is critically reflective and ever improving the quality of patients' lives?

In a radio broadcast interview with Jerome Groopman, author of How Doctors Think,[5] he poses the question: 'How much does intense marketing by pharmaceutical companies actually influence either conscious or subliminal decision-making...? All of us are susceptible to the subtle and not so subtle efforts of pharmaceutical industry to sculpt our thinking'.[102]

Are the health marketing and communication companies seriously thinking about their need to know all regarding patient-centric learning, a term which includes patients' own interpretations of their well-being, occurring through their own experiences?.[103] Are they designing messages that are sure to address the variety of person-centric ways in which people learn and use the learning that is communicated from health related, integrated marketing and communication campaigns?

'Personalized medicine is also a marketing-appropriate name that is sometimes called patient-centric medicine, where patients will be encouraged to manage their own health - to be at the very center of the management of their care - with the guidance and instruction of their healthcare providers'.[6]

Patient-centric medicine has been defined also as a 'focused and integrated proactive approach to delivering healthcare services to patients who have a particular disease to achieve good outcomes at the most reasonable cost'.[104]

While it may appear that this fresh focus is awash with new terminology - patient-centric medicine, personalized medicine, patient-centric learning - each focuses in its own way on putting patients in charge of their own well-being, having first taught them how to be in charge.

In August 2007, 'The Nielsen Company announced the launch of NeilsenHealth, a specialized service dedicated to providing transparency, effectiveness and efficiency for clients seeking a better understanding of the healthcare consumer'.[105]

In November 2007, I was invited by The Nielsen Company to participate in the Third Annual Personalized Medicine Meeting in San Francisco, CA, USA, as part of the panel discussion, 'Patient-centric medicine - personalized medicine from the patient's point of view.' I spoke about how people learn. It became apparent to me that, although fundamental and critical, there is a gap in the current Personalized Medicine discussion on physician and patient learning. The purpose of this Third Annual Meeting on personalized medicine was to continue to examine the scientific progress that is being made, particularly progress for predictive and preventive medicine. My contribution to the panel included an advocacy for 'deep learning', not merely learning, not just comprehension, but the deep understanding for high-impact outcomes for both the physician and patient in order to promote and practice effective preventive and predictive patient-centric medicine.

Educators recognize deep learning as 'the critical analysis of new ideas, linking them to already known concepts and principles, and leads to understanding and long-term retention of concepts so that they can be used for problem-solving in unfamiliar contexts. Deep learning promotes understanding and application for life'.[7,106]

The deep-learning process involves higher order cognitive thinking skills, such as analysis and synthesis. The learner is 'required to integrate components into a new whole'.[107]

In addition, consider the torrent of medical information that streams every day into our lives, not from physicians or other medically-qualified personnel, but from a variety of popular media sources ... in advertisements, commercials, topical stories, in televised talkshows, even through entertainment TV. Studies continue to reveal that the general population of Americans receives its trusted medical information from the media rather than from physicians, developing attitudes that may actually stand in the way of efficient and accurate treatment.

In 2001, the American Medical Association reported, 'The impact of the broadcast media continues to influence consumer knowledge and behavior - and nowhere is that more apparent than in healthcare. A National Health Council survey showed that 90% of adults polled relied on media, rather than their physicians, for healthcare information. Television, radio and print reports are primary sources for new developments in cancer, AIDS and chronic illnesses. Now these traditional media are complemented by the internet as consumers become more aggressive in seeking specific information regarding their own healthcare and that of their family members'.[108]

Scientific information changes rapidly owing to advances in molecular science, genetic research and pharmacogenomic sciences. Medicinenet.com defines pharmacogenomics as 'the study of how variations in the human genome affect the response to medications'.[109] What are the systems and strategies that will boost patient behavior, and how might physicians, care-givers and health communications agencies adopt approaches and strategies to make use of effective learning solutions?

Before personalized medicine can be initiated effectively, an understanding of learning and its ability to affect behavior must be initiated effectively. How people learn (cognitively) is critical in the healthcare communications chain of events. Without learning, nothing happens with the information; it exists merely as information that may not be appreciated, may not be understood and, worse, may be misunderstood.

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