Applying Full Contact Care

This entry is part 2 of 2 in the series HIT and Patient Engagement: The Cart Before the Horse

Many patient engagement projects in the U.S. rely on the design and use of HIT tools and resources. Patient portals, personal health records, on-line patient education are a few examples of these HIT tools. Future efforts, at least for the near term, are very likely to continue seeking to leverage a range of HIT. Given this, it is important to look past the technology itself and more deeply understand what is at the core of patient engagement. Rob Lamberts describes this aptly by noting that by adopting a technology focus first, we risk failing to understand that at its core, patient engagement is about an ongoing relationship of trust, mutual respect and shared decision-making. 1 Central to this relationship is communication – communication that is timely, direct and distinctly informative, leading to deeper knowledge and understanding. Dr. Lamberts further relates, I was recently discussing my ideas on a communication-centered medical record with a colleague. At the end of my pontification, my friend agreed, saying: ‘You are right; communication is an important part of health care.’ I surprised him by disagreeing. Communication isn’t important to health care, communication is health care (our emphasis). As Dr. Lamberst observes, giving patients tools such as a portal just lets them …peer through a peephole and see parts of their medical records.

We could not agree more. This is why we worry about technology-led efforts to engage patients. Kendall Antekeier puts it succinctly: Patient engagement is more than technology – and it’s definitely not ‘merely creating products that people want to use.’ 2

It is quite possible that our technology-first approach to patient engagement faces a similar challenge. We tend to focus on technology as communication, rather than technology as an important tool for communication. It is seductively easy to classify the disengagement problem as first and foremost a lack of information and technology tools – and if we do so, our immediate response is to create these tools. Not that these tools and strategies are de facto bad – they are necessary but inadequate in developing the truly meaningful communication needed at the core of patient engagement.

There may be encouraging results from using HIT in this way. A 2012 AHRQ assessment demonstrated that …substantial evidence exists confirming that health IT applications with (patient centered care)-related components have a positive effect on health care outcomes. 3 Nonetheless, it is worth considering whether the technology itself provides these benefits, or if technology is only the conduit. Stephen Wiljkins notes: There is no app for engaging patients in their own health care absent a strong doctor-patient relationship… The role of physicians, hospitals and other providers is not so much one of needing to engage patients in their care. Rather, providers need to ‘be more engaging’ to patients who are already actively engaged in their health. 4

Is it possible this failure has less to do with technology and more to do with how patients perceive their relationship and communication with their physicians? Is the problem really one of physicians simply being relatively “disengaging” rather than patients “not being engaged”?

We have understood for decades that patient-provider communication – typically in the exam room – is far from ideal. In the 2012 Health Affairs study, investigators found that shared decision-making suffers from a number of communication barriers. 5. These include the fact that even relatively affluent and well-educated patients feel compelled to conform to socially sanctioned roles and defer to physicians during clinical consultations; that physicians can be authoritarian; and that the fear of being categorized as ‘difficult’ prevents patients from participating more fully in their own health care… We argue that physicians may not be aware of a need to create a safe environment for open communication to facilitate shared decision-making. Rigorous measures of patient engagement, and of the degree to which health care decisions truly reflect patient preferences, are needed to advance shared decision making in clinical practice.

Patients and physicians also appear to have very different ideas about where the problems lie. In 2011, Consumer Reports surveyed 660 physicians in the U.S. as well as over 49,000 patients, seeking insight into how each group perceives the relationships between them. 6 Overall, the majority of patients (three out of four) stated they are highly satisfied with their physicians. Yet there were still complaints. For example, while nearly two-thirds of physicians stated that respect and courtesy from patients toward physicians would enable better care, 70% also felt that respect and appreciation from patients deteriorated from little to much worse. In other areas, there is a serious disconnect between how patients and physicians understand the same problems. Nearly four out of five patients indicated their physicians were successful in dealing with pain, discomfort or disability arising from various medical conditions. Yet only about a third of physicians felt they were very effective in this area. Nearly 90% of physicians would like their patients to keep an informal record of their treatments, tests and medications, yet only 33% of patients report doing so. The data from these surveys indicate that if patient engagement is first and foremost about effective communication within a trusting relationship, we still have a way to go.

We believe successful patient engagement requires a patient and provider relationship based on trust. Only that will enable communication and achieve the Berwick Triple Aim. In part, the challenge is also the problem illustrated by providers sharing healthcare data with patients, e.g., Cleveland Clinic’s recent announcement that by 2014 patients can view nearly everything their physician sees in the medical record. 7 It is a data versus information problem. Raw data is just not meaningful to a typical patient. Interpretation of this data, making it useful patient information, is meaningful. For example, providing patients access to their medical records undoubtedly shares much more data than previously available – lab tests, imaging results, and provider notes, for example. But for the average patient, this wealth of data is a dearth of information. A patient logging on to their record and seeing “CHOL/HDL Ratio 2.2 1.5-5.0” now has accurate, precise and timely data, but without interpretation, it is not meaningful information. In fact, providing this data can cause patient frustration, fear or anger depending on the circumstances – behaviors completely counterproductive to patient engagement. Without a trusting relationship with their provider, who brings medical understanding to the raw data, this information fails to encourage useful, informed and shared decision making.

We believe we need strategies that transform healthcare data into information that providers and patients exchange in a trusting relationship. This requires building, or re-building, the patient and provider partnership.

To do this we must get back to basics. The lack of effective healthcare makes people miserable. Since healthcare providers are empathic professionals, such misery makes healthcare professional miserable, too. Empathy is at the very root of healthcare. In their 2006 paper, Bendapudi and colleagues assessed patient perspectives on what physician behaviors were most conducive to a trusting relationship. 8 They discovered seven: The ideal physician is confident, empathetic, humane, personal, forthright, respectful, and thorough. To alleviate misery providers must return to empathizing with their patients, or sharing an understanding and appreciation of the patient’s point of view. This kind of behavior builds trust and an effective platform where patients and providers jointly participate in sensible and meaningful information exchange. Once we establish or re-establish trust between patients and providers we have a basis for discovering a myriad of patient engagement solutions, including those that involve HIT.

  1.  Lamberts, Bob, MD, ‘This is what patient engagement really is’, Kevin MD blog, Med Page Today, May 2, 2013, retrieved on June 25, 2013 from:
  2.  Antekeier, Kendall, ‘Does Patient Engagement Need a Definition?,’ Engaging the Patient blog, May 28, 2013, retrieved on June 25, 2013 from:
  3.  Finkelstein J, Knight A, Marinopoulos S, et al. Enabling Patient-Centered Care Through Health Information Technology. Rockville (MD): Agency for Healthcare Research and Quality (US); 2012 Jun. (Evidence Reports/Technology Assessments, No. 206.) Available from:
  4.  ‘Patient Engagement Is a Physician-Patient Communication Challenge…Not A Health Information Technology Challenge,’ Mind the Gap blog, retrieved on June 25, 2013 from:
  5. Frosch DL, May SG, Rendle KA, Tietbohl C, Elwyn G., Authoritarian Physicians and Patients’ Fear of Being Labeled ‘Difficult’ Among Key Obstacles to Shared Decision Making, Health Aff (Millwood). 2012 May; 31(5):1030-8
  6.  What doctors wish their patients knew: Surprising results from our survey of 660 primary-care physicians, Consumer Reports, February 2011, retrieved on June 25, 2013 from:
  7.  Providing Patients with Convenient, Secure Access to Medical Notes, Images and Results Will Encourage More Involvement in Care and Engagement with Care Team, Cleveland Clinic News blog, June 6, 2013, retrieved on June 25, 2013 from:
  8.  Bendapudi NM, Berry LL, Frey KA, Parish JT, Rayburn WL, Patients’ perspectives on ideal physician behaviors. Mayo Clin Proc. 2006 Mar; 81(3):338-44
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Posted on October 12th, 2013 in Innovating Health Care IT
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