Design for Care

This game-changing book helps unlock one of the most complex and intractable issues of our time. In a clear and insightful text, Peter Jones uses evocative human stories to illustrate where—and why—the systems of healthcare need to be fixed. If modern healthcare is a disaster zone, Design for Care is the rescue service we’ve been waiting for.

John Thackara, author of In the Bubble

Healthcare delivery and experience innovation is the new core competency of organizations that will survive the current healthcare transformation. Design for Care is an outstanding addition to current best practice in the field.

Sam Basta, MD, MMM, FACP, CPE, Founder of Healthcare Innovation by Design

This useful book offers an approach to introducing and integrating human-centered design and systems thinking for future healthcare experiences, with numerous cases of relevant methods, tools, and techniques. Design for Care is simultaneously pragmatic and forward thinking. The implications for the education of future design professionals are immense.

Liz Sanders, Associate Professor in Design at The Ohio State University

This book is the cure for the disease that many have even yet to recognize—that is, the lack of application of systemic design thinking in healthcare. Peter Jones has laid out a clear plan of action that frames today’s problems as tomorrow’s opportunities and innovations. When we use healthcare services, we want—no, need—this design-led revolution to bring us individually and collectively into a safer, healthier, and better place.

Robert M. Schumacher, Managing Director at User Centric

Peter Jones courageously builds bridges between design methods and medical informatics. Those who follow him across the existing chasm will strengthen the care in healthcare, thereby improving the lives of patients and caregivers.

Ben Shneiderman, University of Maryland

Design for Care offers a unique perspective into how a caring mindset in design can promote compassion, health, and wellness, both within and beyond the healthcare system. This book aims to bridge the gaps among design, technology, and health, and is an invaluable resource to me as a health professional and entrepreneur.

Andrea Yip, MPH, The Public Health Studio

Peter Jones tackles hugely important and complex issues in a way that helps us move beyond limitations of user-centered design, design thinking, and human factors to suggest a holistic approach for designing in the realm of health and medicine, addressing emotional, ethical, and scientific concerns. He brings to bear recent thinking in social and cognitive sciences with the rigor and empathy demanded by designing for these massively life-impacting situations.

David Cronin, Director of Interaction Design at General Electric, and co-author of About Face 3

Part One: Rethinking Care and Its Consumers

• Chapter 1: Design as Caregiving
• Chapter 2: Co-creating Care
• Chapter 3: Seeking Health

Part Two: Rethinking Patients

• Chapter 4: Design for Patient Agency
• Chapter 5: Patient-Centered Service Design

Part Three: Rethinking Care Systems

• Chapter 6: Design at the Point of Care
• Chapter 7: Designing Healthy Information Technology
• Chapter 8: Systemic Design for Healthcare Innovation
• Chapter 9: Designing Healthcare Futures

These common questions about design and healthcare and their short answers are taken from Peter Jones’s book Design for Care: Innovating Healthcare Experience. You can find longer answers to each in your copy of the book, either printed or digital version.

1. Who are the stakeholders for this book?
   The book is written to ultimately help health seekers—the patients and people who seek information, health services, and care from today’s fragmented healthcare systems. We all rely on healthcare at some point, for ourselves and those we care for; therefore, everyone can be a stakeholder.”We” are the user experience and service designers in healthcare, care providers improving healthcare service, and product and project managers in health industries. We are the ones who will ultimately employ design in healthcare transformation. Other stakeholders include design and medical educators, management of hospitals and companies providing healthcare applications, and policy makers.
2. How do you resolve the different terminology used in different design disciplines?
   Throughout the book, references are made to concepts and terms that have distinct meanings in their own fields. Because the book presents a convergence of design methods and human research across the sectors of healthcare, a collision of perspectives is to be expected. The design disciplines have variations in design practice, research methods, and artifacts that cannot be resolved in one book. Research and medicine are divided by discipline, method, and legacy.The intention of this book is to raise crucial issues of which designers should be aware. The common bond among all these disciplines is the compelling requirement to solve complex problems in effective and sustainable ways.
   See page 12.
3. What is health seeking?
   The health seeker is any person aware of his or her motivation to improve his or her health, whether sick or not. Health seeking is the natural pursuit of one’s appropriate balance of well-being, the continuous moving toward what we call “normal” health. For some, normal is just not feeling any symptoms; for others, it may be achieving the physical performance of an Olympian.
   See page 15.
   
4. What is Health 2.0 and Medicine 2.0, and is there a difference?
   These designations are applied to coherent trends in Internet-enabled IT in healthcare and medical innovation. The implication of the release number “2.0” signals consensus among IT vendors and innovators that a technology regime shift is being organized, similar to Web 2.0. Health 2.0 ranges from the conceptual shift in the management of patient care using online technology, to healthcare IT start-ups and Web services for health management.Medicine 2.0 was inspired by the shift in IT and data resources from academic medicine and biomedical sciences.
   See page 100.
5. How are design and medicine alike?
   These two fields are similar in many ways. Both are performed as an expert-informed skilled practice that is learned by doing. And both are informed by observation and feedback, by evidence of their beneficial effects. Both disciplines are motivated by a deep desire to help people manage and improve their lives, individually and culturally. Modern medicine is guided by scientific inquiry much more than design, but then designers and engineers in healthcare often have scientific backgrounds. In medicine, evidence of outcome is gathered by measures of health and mortality, controlled experiments, and validated in peer-reviewed research. For clinical practice and organizational change, however, validation is often based on the social proof of adoption in practice. Design interventions in healthcare are often assessed by the analysis of empirical evidence, but in few cases would experimental validation be appropriate for service or interaction design. Different evaluation methods are valid in their contexts, a proposition that may not yet be acceptable across healthcare fields.
   See Chapter 6.
6. Why do you say “There is no user in healthcare”?
   The designation of “user” privileges the use of a particular system and its functions, which promotes a language of efficiency based on “user tasks.” It biases design toward optimizing for a specific set of use cases based on a strong representation of a primary user of IT. Healthcare is a huge social system with many participants and roles dedicated toward the recovery of individual and social health. Few of these roles actually require IT for their performance. A user-centered perspective risks isolating a single aspect of use and interaction, when nearly everything involves more than one of the primary participants: consumers, patients, and clinicians. If we take an empathic view, it becomes clear that users and even patients are names of impersonal convenience. The term health seeker is proposed as an unbiased way of understanding the person seeking care as a motivated actor making sense of a complicated system to achieve health goals.
   See page 13.

In 2012, my wife and I were partners on a cancer journey. She was diagnosed with stage IIIA breast cancer in December 2011, and the cycles of chemotherapy, surgery, and radiation therapy filled the first seven months of 2012.

As a clinician, I reviewed every order, every note, and every plan in her Beth Israel Deaconess online medical record. As a patient, she viewed everything written about her in her Beth Israel Deaconess PatientSite personal health record. I cannot imagine how care coordination, shared decision making, and communication would have been possible without ubiquitous patient– provider access to all the data, knowledge, and wisdom related to her care.

In Design for Care, Peter Jones outlines the critical role of design in the wellness care of the future, ensuring that every provider and patient is empowered with the services and tools they need for healthcare quality, safety, and efficiency. His thoughtful analysis includes all the core concepts that are driving the US healthcare IT stimulus—policies and technologies that engage the patient, eliminate disparities, protect privacy, and prevent avoidable harm.

When I mentioned that my wife’s care required universal access to data, knowledge, and wisdom, what did I mean? Data includes the simple facts about her care—an appointment is made, a medication is given, a lab test has a result. Information is the interpretation of her data in a manner that is relevant to her care—her hematocrit at baseline is 39, and after chemotherapy it is 30. Her medications have caused side effects that may outweigh the benefits of the drug. Wisdom is applying decision support rules to her information that optimizes her care. Because her tumor is estrogen positive, progesterone positive, and HER2 negative, the best therapy is Cytoxan/Adriamycin/ Taxol. Her accumulated radiation dose from all the mammograms, CT scans, and other studies is concerning, and thus ultrasound should be used when possible.

We clearly need better ways to move between data and information to knowledge and wisdom in today’s complex healthcare world. This book illustrates these points and emphasizes the need for patients and providers to embrace a wise integration of technology into healthcare service. Meaningful use and care improvements through universal adoption of electronic tools is just one of the major trends in the era of healthcare reform.

“Patient-centered medical homes,” “accountable care organizations,” and “population health” are the new buzzwords. We need to rethink and actually design the new models of service, institutional practice, and patient engage the care model, and don’t simply replicate business as usual. The new concept is that care is no longer episodic, but continuous. Patients are engaged in their daily lives, and the emphasis is no longer on the treatment of illness but the preservation of wellness, maximizing functional status and care according to the preferences of the patient.

Peter Jones examines the kinds of innovations that are moving care away from academic health centers and into the community and homes. This trend is essential—healthcare in the United States consumes 17% of the gross domestic product. It is a poor value, with significant cost and less than stellar outcomes. To bend the cost curve and create high-value care, it is wise to follow the recommendations outlined in this book. Embrace technology, but design it well and consider its future trajectory and how it affects safety and interaction with patients. Engage the patient and innovate in ways that focus on longitudinal wellness rather than episodic encounters for illness.

I am confident you will find this book a helpful road map to guide your own journey to improve health and healthcare.

—John Halamka, MD
Chief Information Officer,
Beth Israel Deaconess Medical Center, Boston

This book was made possible by the extraordinary community of contributors who supplied ideas, research, case studies, news, perspectives, and feedback in support of the book. Keeping track of everyone was helped by the Designforcare.com online community, whose members numbered 472 at press time.

Special thanks to those who provided case studies, reviews, and contributed high-value work and materials. James Caldwell, designer of visual communications for print and new media, brought the book to life by advising, designing, and rendering the visual content. James had the audacity and skill to create a consistent design language in the book by re-composing the original figures from top designers who provided their materials. I thank the designers who contributed to cases, methods, and concepts, especially Hugh Dubberly, GK VanPatter, Birger Sevaldson, and Liz Sanders.

Innovative physicians and medical experts brought vision and reality to the book. I’m especially grateful to Dr. John Halamka, CIO at Beth Israel Deaconess Medical Center and professor at Harvard Medical School, for his thoughts in the Foreword. Cardiologist Antony Pothoulakis contributed to Elena’s medical journey across the book’s chapters, and with George Demosthenous, also from uKare, contributed their personal health concept. Special thanks to CICC’s Dr. Dante Morra and designer Leslie Beard, now both at Trillium Health Centre, Ontario. Dr. Mike Evans of the Health Design Lab and designer Heather McGaw contributed stories and cases in healthcare innovation. Dr. Sam Basta of Healthcare Innovation by Design has been a supporter from the beginning. Thanks to Dr. Richard Cook and Dr. Chris Nemeth, and to my mentor, Dr. Aleco Christakis.

OCAD University graduate students contributed exemplary work from research and in case contributions. Thanks to Oksana Kachur, Karl Schroeder, Chris Meier, and Jonathan Resnick from our first class of Strategic Foresight and Innovation students; Josina Vink, Martin Ryan, Uma Maharaj, Jessica Mills, Phouphet Sihavong, Jen Chow, and Eric Blais from our second year; and from our third year, George Shewchuck, Michi Komori, Tai Huynh, Jen Recknagel, Jayar Lafontaine, and Ian Moss, as well as other great grad students whose work is in progress. I wish to acknowledge as well the inspiration of many students whose work I could not fit into the final cut.

Several contributors helped significantly at the start of the book project. Special thanks to contributors Min Basadur and Mauro Amoruso. Julie Cabinaw, Becky Reed, Alexandra Carmichael, and Amy Tenderich helped with cases and concepts. Satu Miettinen and Arne van Oosterom from Europe, and Dr. Peter Pennefather and Peter West from Canada, brought great books and papers to my attention.

Toward the end of the project, a great publishing team produced this book and worked impeccably with my writing, research, and revisions. Thanks to JoAnn Simony, my tireless editor; Lou Rosenfeld, my pioneering publisher; and the production staff, Karen Corbett and Danielle Foster.

If I’ve left someone out that contributed in any way, I’m sorry for the oversight. Please contact me at peter@designforcare.com to contribute to the ongoing publications and posts online.

—Peter Jones, Toronto, March 2013

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