Messages from the ISPOR Presidents

Deborah Marshall, PhD, MSHA

Deborah Marshall, PhD, MSHA

2012-2013 ISPOR President
Canada Research Chair, Health Services and Systems Research; Associate Professor, Department of Community Health Sciences, Faculty of Medicine,
University of Calgary; Director, Health Technology Assessment, Alberta Bone and Joint Health Institute
Calgary, AB, Canada

Some of the world's biggest companies are in a pitched battle to dominate the home entertainment market. The battlefield is the living room, the weapon is customization, and the prize is the big screen. They are developing next-generation consoles that will serve as the dashboard for the entire entertainment experience, bringing to your television shows, music, movies and web content while streaming videos . . . all customized to your preferences based on voice-recognition.

Customization is where the world is going. It's happening fastest in the entertainment industry. It may well herald a revolution in health care.

Customizing health care is really about delivering precision medicine. That is, in essence, what we mean when we talk about "getting the right care to the right person at the right time".

Over the past year, I have spoken at ISPOR conferences and written in this space about knowledge translation (KT), systems thinking, patient preferences and patient engagement. These are the building blocks of precision medicine.

  • KT is about engaging governments, care providers and patients to mobilize knowledge into policy and practice.
  • Patient preference is about understanding the needs and values of patients and making them an integral part of clinical practice and service planning.
  • Systems thinking is about understanding the linkages and relationships among different components of a system. It is the key to integrating patient preferences.
  • Patient engagement is enabling individuals to gain knowledge about their condition and treatment options, to take an active role in managing and treating their condition, and to influence medical practice and policy.

Moving Into a Perfect Precision Medicine World

In the prefect precision medicine world, a doctor looks at the patient's medical history and genome information as well as environmental factors and the patient’s preferences. All of this information is used to identify precisely the nature of the illness, give an accurate prognosis, and develop a custom-tailored treatment plan.

The new insights needed for precision medicine are being developed, but they are not always being incorporated into health care decisions, according to a report prepared by the U.S. National Academies. [1] “ Many disease subtypes with distinct molecular causes are still classified as one disease...The failure to incorporate optimally new biological insights results in delayed adoption of new practice guidelines and wasteful health care expenditures for treatments that are only effective in specific subgroups.

The report, prepared by the Committee on a Framework for Developing a New Taxonomy of Disease, suggests a framework for creating an information system, called a Knowledge Network of Disease. Researchers, health care providers and the public would share and update the information. “By analyzing connections between information sets, for example, between the genome and environmental exposures, basic scientists would be able to formulate and test disease mechanisms, and clinicians could develop new treatments based on unique features of a disease and tailored to each patient.” [1]

In the meantime, we remain in what doctor, educator and author Tom Ferguson called “the Industrial Age of medicine”, characterized by mass production [2]. An early and highly influential advocate of patient empowerment, Ferguson promoted moving medicine into the Information Age where patients would have the knowledge and the tools to be equal partners in their care with health professionals and health systems (Fig. 1) [2].

The push toward precision medicine is coming from two powerful forces: empowered patients and the ailing economy.

Force One: The Empowered Patient

Patients are warriors in the digital revolution – warriors armed with data, opinions and advice, fortified with a range of decision-support tools, and more empowered than ever to question, challenge and be actively involved in health care decisions.

Patient as passive observer is passé.

Patients want better, more personalized care. They want to be involved in decisions about their bhealth care. And many want to be actively involved in managing their condition.

The Institute of Medicine report, “Crossing the Quality Chasm: A New Health System for the 21st Century,” reflects this in its 10 rules for redesigning health care [3]. Rules one through four are particularly powerful endorsements of patient empowerment and precision medicine:

  1. Care is based on continuous health relationships.
    Patients should receive care whenever they need it and in many forms, not just face-to-face visits. This implies that the health care system must be responsive at all times, and access to care should be provided over the Internet, by telephone, and by other means in addition to in-person visits.
  2. Care is customized according to patient needs and values. The system should be designed tomeet the most common types of needs, but should have the capability to respond to individual patient choices and preferences.
  3. The patient is the source of control. Patientsshould be given the necessary information and opportunity to exercise the degree of control they choose over health care decisions that affect them. The system should be able to accommodate differences in patient preferences and encourage shared decision making.
  4. Knowledge is shared and information flows freely. Patients should have unfettered accessto their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information.

Force Two: The Ailing Economy

The second force in the push toward precision medicine is the prolonged global recession, which has brought an acute sense of urgency to control rising health care costs associated with long-term management of chronic diseases.

Our Industrial Age medicine is ill-equipped to meet the current medical needs of our populations. Health care services and infrastructure continue to revolve around acute care. But chronic conditions have become our biggest challenge.

A report published by PwC’s Health Research Institute supports this view [4]. “Today, people both old and young are developing chronic diseases in record numbers, in part because diseases that were once fatal are now chronic, draining health resources and increasing health spending while they extend life. At the same time, it is becoming widely accepted that chronic diseases are associated with behavioral, socioeconomic, and genetic factors that the current medical delivery system does not, for the most part, address.”

The report forecasts that over the next five years, the trend to individuals taking greater ownership of their health “will lead to significant health industry business model changes, more regulatory reforms focused on efficiency and effectiveness, greater investments in prevention, and a growing role for information technology to facilitate information sharing and to provide interactive, customized care in a virtual world.”

A Voyage Down Revolution Road

Precision medicine has the power to take us on a voyage down Revolution Road. It will shake up a long-entrenched system in every way. It will change:

  1. How we make clinical decisions;
  2. how we practice and teach medicine;
  3. how we finance health care;
  4. the way we regulate research; and
  5. the longstanding patient-provider relationship.

In their article, “Preparing for Precision Medicine,” Reza Mirnezami, et al. caution that consumers and physicians face uncertainty in the Information Age [5]. “Patient-clinician dynamics are changing, and the successful implementation of precision medicine will hinge on patients’ adaptation to key changes. Successful public engagement will require a cultural shift, with patients viewed not as study subjects but as central participants in the precision-medicine community, able to shape, develop, and disseminate research, given the right opportunities and access.”

They suggest the transition to precision medicine should be “steered by international consortia including leaders from academia, health care, government, and industry that draw up proposals for public consultation.”This is a cue for ISPOR to take a leading role in propelling this change. We can bring all the necessary stakeholders together to do this, because the stakeholders are among us. They are the 13,000 researchers, clinicians, academics, industry people, policy makers and administrators who comprise our ISPOR community.

A Last Word

This is my final column as president of ISPOR. My term is coming to an end and on July 1, 2013, I will hand over this role to incoming president Bill Crown.

It has been a hugely stimulating, wonderfully fulfilling and very busy year. I set out two themes for my tenure as president – systems thinking and knowledge translation as avenues of health systems change. Through these themes, I have over the past year bridged my vision of health care to that of ISPOR, exploring the role of patient preferences, patient engagement and, finally, precision medicine in the context of systems thinking and knowledge translation.

I want to thank you for the opportunity to influence the role of ISPOR in health systems change, and for putting your trust in me to lead this influential and respected international organization. My sincere thanks to Marilyn Dix Smith, our tireless executive director who has championed ISPOR from embryo to maturity as the leading international society it is today, to our talented ISPOR staff who make all of this happen, and to you, who make up the influential ISPOR community and who contribute many volunteer hours to advancing our work.

I look forward to continuing on this journey with you to build a health system centered on the patient.

Messages from the ISPOR Presidents