The Shared Agenda: how patient-centered health information technologies help doctors and patients care

by Mehret Mandefro (@drmehret), Ellen Donahue-Dalton, and Peter L. Levin (@pllevin)

Mehret is with Amida Technology Solutions, Ellen is with Medecision, and Peter is with Amida Technology Solutions

I. Introduction

The cult classic Zen and the Art of Motorcycle Maintenance, written by Robert Pirsig and first published in 1974, is a meditative narrative about life, technology, and art. The heart of the book revolves around the concept of Quality, which is always capitalized. Pirsig’s main point is that caring and Quality are connected:

“…I talked about caring the first day and then realized I couldn’t say anything meaningful about caring until the inverse side, Quality, is understood. I think it’s important now to tie care to Quality by pointing out that care and Quality are internal and external aspects of the same thing. A person who sees Quality and feels it as he works is a person who cares. A person who cares about what he sees and does is a person who’s bound to have some characteristics of Quality.”[i]

The lesson is that Quality is both measured and experienced. It is the outcome of combining analytics and emotion. According to Pirsig, Quality is the perfect unification of science and art. Equal parts logic and soul.

Alas, quality — as defined in health care — could not be further from Pirsig’s meditation. High quality care as conventionally understood rarely addresses patient satisfaction or how a patient feels after a clinical encounter.

Ironically, prior to the 20th century, clinical bedside manner was all that mattered. Making sure patients’ voices and concerns were addressed was the only form of treatment available. Today, the emphasis placed on the mastery of technical knowledge leaves little room for softer skills. That’s why taking stock of patients’ emotional needs, values and preferences in the clinical encounter as a component of improving health care quality is an essential part of the recently announced reforms under way to establish a value-based health care system.[ii]

II. Empathy

Caregiving matters to patients a lot and it requires something beyond science and technical training — it requires empathy. The absence of empathy from mainstream discussions about the quality of care reflects the “caregiving paradox” in American medicine. Explaining this paradox, the medical anthropologist Arthur Kleinman writes, “The balance between science/technology and art has shifted so far towards the former that the latter is a pale shadow, a fragile remnant of what had for centuries been crucial to the work of the doctor.”[iii] Restoring this balance is the focus of dozens of new efforts aimed at helping doctors be empathetic.[iv]

These efforts are setting a new standard of care where empathy is the baseline. Turning this rhetoric into reality relies on the recognition that what matters to patients is just as important as what matters to physicians in the clinical encounter, and that there is more overlap between these respective sets of goals then recent debates about reform have allowed. Empathy is a two-way street. Doctors and patients both have to share information and receive it in order to achieve care that is empathetic and effective.

This is why bidirectional communication pathways are so important for patient-centered care. Too often, providers are assigned the sole responsibility of fixing the caregiving paradox. But the truth is patients have to give a little too. It’s difficult to take patient preference into account if none are expressed. That’s why efforts focused on respecting patient voice go hand in hand with efforts aimed at strengthening it.

To date, empowering patients with the information they need in order to determine what their preferences are has been sorely missing. Yet, it is these explorations of preferences, needs, and values that can begin to build empathy in the clinical encounter. Stripped down to their most basic form — these explorations are about having respectful conversations that make sure patients have access to — or simply have — the information they need to make informed decisions with their providers. The point is: doctors and patients need to share information in order to share decision-making. But how do we insure this happens? More importantly, how do we measure it?

The answers to these questions build on a foundation of evidence that shows increasing patient satisfaction matters. Patients who are engaged in their care tend to experience better outcomes at reduced cost to the health care system.[v] For example, patients that participate in a shared decision-making process help address the problems of overtreatment by choosing major elective surgery less often.[vi] They also tend to choose less costly but effective interventions such as physical therapy for lower back pain.[vii]

That’s why accountable care and value-based reimbursement mechanisms are beginning to prioritize patient satisfaction.[viii] What patients think and what they say about their clinical encounters can begin to change the dynamics of what high quality care means in the doctor’s office. This means patients can hold providers accountable to a new standard, and the federal government is helping them do that.

For example, CMS recently announced that they would like to have 50% of all Medicare provider payments fall under a value-based payment model by 2018. These new reimbursement models include ACOs, patient-centered medical homes, and/or bundled payments. Healthcare economics is now being linked to patient satisfaction — pretty radical stuff if you know the recent history of health care financing.

Indeed, linking payment to patient satisfaction has been a long time coming. Calls for “patient-centered care” have been echoing these concerns for decades.[ix] In the landmark Institute of Medicine (IOM) report Crossing the Quality Chasm, patient-centered care was defined as “care that is respectful of and responsive to individual patient preferences, needs, and values” and that ensures “that patient values guide all clinical decisions.”[x] Another example of the community’s recognition that we can improve the performance of the American healthcare system by holding providers accountable to higher patient-centeredness standards is the attention it receives in National Quality Strategy (NQS). Released in March 2011 and updated yearly, the NQS lays out priority areas for creating a value-based care system and patient centered care is a big part of it.[xi]

The inclusion of patient-centered care in efforts to improve the quality of care is a response to two observations. First, the still-pervasive ease with which patient preferences and voice can be dismissed in a clinical encounter. Some doctors still have the tendency to convey information without pausing to ask or consider what a patient may have to say. Second, the dearth of timely information patients need in order to share the decision-making with their providers. Without access to health information it’s difficult for patients to engage in their care. Taken together, these have been obstacles to improving the quality and experience of care — until now.

Patient-centered health information technologies are empowering patients to take control of the clinical encounter and better understand how they can participate in their care. These technologies are also making it easier for doctors to have the information and time they need to consider patient preferences. By making it easier for patients to access their health information and communicate with their doctors, patient-centered health information technologies are beginning to create and nourish empathy where it has been missing. More specifically, these technologies function as tools to support and strengthen the two-way communication in the clinical encounter that is essential for shared decision-making — the cornerstone of patient-centered care.

III. Technology and Care

Technology can help clarify and promote the shared agenda between patients and doctors and insure shared decision-making happens. Research studies that have examined shared decision-making between patients and providers describe it as a continuum that is comprised of three phases: consultation, involvement, and shared leadership/partnership.[xii] The process begins with consultation, where patients receive information from their providers. Next comes involvement where providers ask patients about their preferences for treatment plans. The last phase is partnership and shared leadership — the Holy Grail. On this end of the spectrum all treatment decisions providers make take patients’ preferences into account alongside medical evidence and clinical judgment.

The hardest part of delivering on the promise of patient engagement is actually doing something with the information collected from the patient. Currently, even if patients voice preferences, there is no way to make sure providers integrate it into their care plan. There is no tried-and-true path to partnership. Even if there was, providers often do not have the time. In a systematic review of 38 studies examining health attitudes toward shared decision-making the most frequently cited barrier to implementing shared decision-making amongst physicians was time constraints.[xiii] But this does not reflect provider indifference to patient preference. Ultimately, a better outcome and experience for patients is always in the interests of the providers taking care of them.

This is where technology can play a central role. Imagine a scenario in which a busy provider receives an email message with an attached medical record that includes the patient’s concerns. Receiving it before the appointment alleviates the pressure of time and prompts the provider to consider the patient’s needs outside the confines of a jam-packed day in the clinic. It also introduces a potential need to change the workflow of the clinic to include virtual rounds focused on reconciling the information patients share with information that already exists in the medical record. Reconciliation is how providers and patients can begin to establish a clear shared agenda. Any tools that can help patients reconcile their preferences and needs with their providers helps hold providers accountable to a new standard that facilitates shared decision-making. One such tool is making sure patients have access to and use their personal health records.

Providing patients easy access to their health information is a critical step in building a foundation to support shared decision making and to improve health outcomes. Giving patients access to their health information results in greater engagement in care decisions and enhanced communication with providers that can help to reduce errors and improve healthcare quality.[xiv] More specifically, improving patient access to health information is a key component of improving care coordination because it enables timely and accurate communication between patients, providers, and caregivers. Providing patients with timely information also helps strengthen their voice and ability to participate in making informed decisions.

This is where the Blue Button shines. Blue Button gives people the information and tools they need to be partners in their health, and is a great example of how technology can be leveraged to let patients help. The Blue Button, born at the Department of Veterans Affairs and today administered by the Department of Health and Human Services, allows patients to view, download, and transmit their personal health information from payers, pharmacies, and clinical care providers. Once the information is in the patients’ control, they can share it with other caregivers and people they trust. At VA, for example, the Blue Button record includes problem lists, medications, lab results, procedures, and more. Blue Button services are also currently available in patient portals provided by Tricare On Line (the health service delivery organization of the Department of Defense), the Centers for Medicare and Medicaid Service, several private sector insurance companies, and hundreds of other health related entities. A wide range of payers, providers, consumer advocacy groups, health-related associations, and nonprofits, have all pledged to participate[xv] or already participating.

The Blue Button enables a bidirectional communication channel between providers and patients that fundamentally restructures how patient voice and preference can impact care decisions. By providing patients with access to their complete medical history, regardless of format, care teams can manage and orchestrate services between them, better understand patient preferences, and strengthen their voice in the clinical encounter. Building bi-directional communication channels makes it easier for providers to share the decision-making and to incorporate the patient voice into care decisions.

Insuring effective two-way communication between providers and patients through Blue Button compatible software also affords the chance to aggregate patient feedback as part of routine quality improvement efforts. The legislation calling for the creation of ACOs also calls for measuring value as reported by patients.[xvi] This has been difficult to do at scale. Capturing patient feedback on the quality of care has been elusive because of the prohibitive costs of administering surveys. But with technologies that hardwire bidirectional communication capabilities into the care process, getting this data is no longer limited to surveys. Blue Button capability creates a feedback-loop that can easily scale.

Lastly, patient-centered information technologies can also give providers a better perspective of patients’ lives. The myriad of devices and apps that track everything from how many steps patients take in one day to hourly fluctuations in blood glucose, are creating new kinds of data that doctors can use to inform clinical care. The technologies that automate, digitize and stream health information have an acronym all their own — patient-generated health data (PGHD). PGHDs are defined as “health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.”[xvii] PGHDs are similar to another kind of data stream– patient reported outcomes (PRO). PROs are patients’ “feedback on their feelings or what they are able to do as they are dealing with chronic diseases or conditions. PROs can also be measured when patients are undergoing treatment or are participating in a clinical trial.”[xviii]

PGHDs and PROs are data streams that have unharvested potential to impact clinical care. Health information from the patient perspective can help clinicians better understand patient life experiences and quality-of-life concerns that influence health outcomes and clinical care decisions. Yet, there is still no systematic way for this information to be integrated within the care process. Blue Button compatible software can begin to change this by reconciling relevant information from PGHDs at the point of care.

Imagine a scenario in which a clinician has prescribed a three-month trial of therapeutic lifestyle changes to a borderline hypertensive patient that includes dietary recommendations and exercise. Any information that provides data about whether or not a patient truly adhered to these recommendations becomes important for clinical care. The next time that patient walks into a doctor’s office, the decision to begin pharmacotherapy for hypertension or not stands on much firmer ground thanks to data that tracked what that patient ate and how many miles she ran or walked since the last visit. In this scenario, PGHDs provides actual data points at the point of care that otherwise would have been based on conjecture.

IV. Conclusion

Technology has always propelled medicine forward, ever expanding its richly endowed scientific base. These innovative leaps forward improve the quality of care and help providers meet patients’ needs. Patient-centered information technologies offer even more — the chance to improve the quality of care by providing a tried-and-true path to the practice of patient centered care. Tools like the Blue Button draw providers closer to their patients and exemplify the strength technology can have to deepen human experience. The use of patient-centered information technologies to create and engender empathy in the clinical encounter demonstrates why Pirsig’s definition of Quality as a measure of experience and outcome is so important. The affective components of quality must be addressed in order to truly improve our care system.

Blue Button-like tools provide a simple and effective way to establish a shared agenda between doctors and patients that makes empathy the default in the clinical encounter instead of an exception. Care that is empathetic delivers on the promise of patient engagement and shared decision-making. For these reasons, we believe a sharp focus on the adoption and deployment of patient-centered health information technologies are essential to all health reform efforts that seek to connect empathy, quality, and patient-centered care.


[i] Persig, R.M. 1974. Zen and the Art of Motorcycle Maintenance. New York, NY: Bantam Books, p.269.

[ii] Porter, M.E. 2009. A strategy for health care reform — toward a value-based system. New England Journal of Medicine, 36(2):109–112.

[iii] Kleinman, A. 2008. Catastrophe and caregiving: the failure of medicine as an art. The Lancet, 9606:22–23.

[iv] Riess, H, Kelley, J.M., Bailey, R.W., Dunn, E.J., & Phillips, M. 2012. Empathy training for resident physicians: a randomized controlled trial of a neuroscience-informed curriculum. J Gen Intern Med, 27(10): 1280–6.

[v] Remmers, C., Hibbard, J., Mosen, D.M., et al. 2009. Is Patient Activation Associated with Future Health Outcomes and Healthcare Utilization among Patients with Diabetes? J Ambul Care Manage, 32(4):320–7.

[vi] Stacey, D., Bennett, C.L., Barry, M.J. et al. 2011. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 10:CD001431.

[vii] Weinstein, J.N., Clay, K., Morgan, T.S. 2007. Informed Patient Choice: Patient-Centered Valuing of Surgical Risks and Benefits, Health Affairs, 26(30):726–730.

[viii] Berwick, D. and Gilfillan, R. 2011. Accelerating Innovation at the Centers for Medicare and Medicaid Services, Health Affairs Blog. Available at:

[ix] Gerteis, M., Edgman-Levitan, S., Daley, J., Delbanco, T. 1993. Through the patient’s eyes. San Francisco, CA: Jossey-Bass.

[x] National Research Council. 2001. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press.

[xi] Department of Health and Human Services (HHS). 2011. Report to Congress: National Strategy for Quality Improvement in Health Care, Washington, DC: HHS.

[xii] Carman, K., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., and Sweeney, J. 2013. Patient and Family Engagement: A Framework for Understanding the Elements and Developing Interventions and Policies. Health Affairs, 32(2):223–31.

[xiii] Legare, F., Ratte, S., Gravel, K., et al. 2008. Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions. Patient Educ Couns, 73(3):526–35.

[xiv] IOM. Committee on Quality of Health Care in America. 2001. Crossing the Quality Chasm. A New Health System for the 21st Century. Washington, DC: National Academies Press.

[xv] Putting the I in HealthIT: Who is Pledging It?

[xvi] Dept of Health and Human Services, Centers for Medicare and Medicaid Services. 42 CFR Part 425. Medical Program; Medicare Shared Savings Program: Accountable Care Organizations. Final rule.Available: