Medical science has enabled our health care system to deliver outcomes that would have been impossible a generation ago, and advances in fields such as genomics and stem-cell therapy offer immense promise to further accelerate medical innovation.
One promising trend in improving overall care is the growing emphasis on incorporating voices of patients, consumers, and caregivers into the design of programs and policies. Health care is at the beginning of a dialogue with the world on evidence, outcomes, and patient well-being that will transform care.
As extraordinary as insights from the laboratory often are, better understanding the experiences of patients and health care providers can provide a roadmap for the critical last mile of medical care, where all policies, procedures, and practice converge into action.
Below, I offer some approaches drawn from my experiences working in health-care-delivery organizations, government, and industry. The principles I propose are my own and do not reflect official policies of any organizations with which I am affiliated.
We must strive to move beyond our own experiences. Those of us who work in health care inevitably refer to our own experiences with the health care system when making decisions about strategy and program design. Even at high levels of policy or strategy discussions, it is common to hear, “when I was at the doctor…” or “when my mom was sick…” And while we can gain insights from these personal encounters, it’s critical to remember that our expertise inside the field strongly informs our experience.
All leaders in health care have a level of access, familiarity, and comfort with medical care that vastly exceeds that of the average patient. Consequently, as health care providers, we have to ask ourselves this question: What stories are we not hearing? If we don’t keep ourselves honest and consider the voice of the patient not in the room, we overlook opportunities to improve care for a substantial number of people.
Michael Porter and I recognized this limitation in our work studying the organization and structure of cancer-care delivery and published a case study that aims to track the complexities of navigating the healthcare system. It tracks the experience of a patient and her family as they seek to treat her adrenocortical carcinoma, cancer of the adrenal glands.
From the patient’s perspective we see the confusion of conflicting treatment recommendations, the frustration of opaque hospital processes, and the strain of deciding on a course of action – all through the lens of a diagnosis that gave the patient just a handful of months to live.
As health care professionals, we have to consider the context of that type of patient experience: a person struggling with a dauntingly complex system while facing a heart-wrenching turn of events.
Get authentic patient voices in the room. To lead change in health care, organizations must get in the room the voices of real patients – people whose lives are touched by our products and services.
Whether it’s legislation or strategy, the best-intentioned and most carefully considered policies will have weaknesses that are exposed only through execution. It’s no surprise that complex processes will face challenges in implementation. But by integrating patient voice early and often, those roadblocks can be better understood and more quickly remedied.
At Merck, Michael Rosenblatt, the company’s chief medical officer, and I worked with colleagues to develop “patient input forums.” This initiative brings in volunteer patients who suffer from health conditions relevant to Merck’s research. The forum typically features patients interviewed by master clinicians who are their treating physicians.
Through these forums, Merck scientists can better understand disease from the patient’s perspective, ask questions about care treatment and process, and identify areas of unmet need. They see firsthand that a patient isn’t a disease with a body attached but a life into which a disease has intruded.
At a minimum, these forums provide inspirational value to people within the company who support the company’s mission of improving and saving lives. At best, these forums can be the source of new insights to drive discovery.
Embrace online communities, but know their limitations. Online communities are a powerful, emerging avenue for insight into patient sentiment about a disease or therapy. Many communities are focused on particular diseases and focus groups, offering a locus of conversation on specific topics.
There are, of course, limitations, one of which is self-selection bias. People participating in an online community around their disease are already more engaged, more informed, and more tech savvy than many others. So while leaders in the health care system integrate the (undeniably valuable) insights from these communities into decision-making processes, we have to account for these patients’ above-average sophistication and its implications for their treatment choices.
Remember the other influences of patient health. As impactful as the increasing focus on patient voice can be, it’s critical for organizations to consider the other influencers of a patient’s health that the patient himself might take for granted. Family members, cultural traditions, stress levels, sleep habits, and numerous other lifestyle factors impact health but are often considered “just how things are.”
As patient perspective is better integrated into health care decision-making at all levels, the health care industry has an opportunity to expand the conversation to include everyday factors that collectively have a meaningful impact on health.
Overcome the risks – they’re usually worth the benefits. Because protecting patient privacy is so important in healthcare, integrating patient voice is not as simple as one might expect. Meeting the regulatory needs of any health care organization takes planning, flexibility, and cooperation across teams.
Through engaging the patient voice, we have a powerful tool to inspire and shape new solutions in health care, and there is real value in working through the associated challenges. As the health care system takes a more collaborative approach to helping patients and as patients become active participants, everyone wins.
source: What It Really Takes to Listen to Patients April 04, 2014 at 04:00PM