Without interoperability of medical records between health systems, patients are the best chance for the medical system to provide continuity of care when medical records from a different health system are difficult to obtain. Providing enhanced access to medical records can help patients feel more involved in their own care and in their treatment journey. In addition, patient-friendly clinical pathways can help patients understand when/why they can use specific treatments and give them a broader view of their future care journey. When patients and caregivers feel more involved in their care, they may be further driven to offer any and all information to the physician to help solve the clinical problem at hand.
Health literacy, access to health records, and social determinants of health all make a difference in outcomes, but where do these issues fall in the clinical pathways conversation? Health care can be inhibited by data silos—a problem that, at times, can only be solved by individual patients. At the center of care, patients can help put the data together. All health care stakeholders, including patients, have the shared goal of increasing quality and decreasing costs; increasing patient access to medical records and patient-friendly clinical pathways would help make this goal a reality.
“Escape Fire”: A Way for Change
Two decades ago, on December 9, 1999, Dr Donald Berwick made a landmark presentation at the Institute for Healthcare Improvement (IHI) annual national forum.1 He laid out the elements needed for health care to deliver maximum clinical and financial outcomes. The basis for his principles came from his expertise as a physician, his experiences as a caregiver/navigator for his wife through a serious illness, and the events of a forest fire that took the lives of 13 young firefighters. “Escape Fire,” as his speech was titled, begins with a description of a 1949 wildfire that broke out on a Montana hillside; it took the lives of 13 young men and changed the way firefighting was managed in the United States. Dr Berwick applied the lessons learned from this catastrophe to the health care system, outlining an ambitious program for reform called an “escape fire”—a term firefighters use to refer to a fire lit deliberately to clear an area of land in an emergency to provide an escape from an oncoming blaze. In the presentation, Dr Berwick outlined the problems with the health care system—medical errors, confusing and inconsistent information, and a lack of personal attention and continuity in care—and sketched an ambitious program for reform. In this new system, Dr Berwick concluded, “the possibility of invention and the opportunity to make sense will open not just routes of escape, but vistas of achievement, that the old order could never have imagined.”
Total open access to a patient’s medical records is really at the heart of Dr Berwick’s plan for change. His plan called for improvements in 3 central areas: access, evidence-based care, and interactions/accountability. Access requires true 24/7/365 access to care, rather than the typical 9-to-5, 5-day-a-week approach that most patients experience today. Access also applies to one’s medical records, including ongoing records of the care that is being delivered based on best-available evidence from diagnosis and through treatment. Evidence-based medicine means care should be consistently based on current medical research and take into account patient factors. The third element focuses on interactions/accountability. In this area, Dr Berwick outlines 4 essential components:
- To regard information transfer as a key form of care
- Interactions should be tailored to patients’ needs
- The patient is the source of all control
- The interactions we nurture should be transparent (accountability)
All of these elements—access, evidence-based care, and interaction/accountability—can be fulfilled through an open medical records policy and greater use of clinical pathways as an educational and decision support tool. The open medical records model has been around even before Dr Berwick’s “Escape Fire” speech. The 1973 New England Journal of Medicine article “Giving Every Patient His Medical Record: A Proposal to Improve the System” argued that 4 serious problems—maintaining high quality of care, establishing mutually satisfactory physician/patient relations, ensuring continuity, and avoiding excessive bureaucracy—could be alleviated if patients were given copies of their medical records.2 Of course, 50 years ago, we would be talking about sharing paper medical charts. With today’s electronic records and expanded internet access, however, the ability to share records has become much more efficient and effective.
With the shift from a volume-based reimbursement system to a value-based one, as well as the expansion of the internet, the proliferation of smart phones, and increasing health care demands, it may be the time for real change.
Patient Access to Medical Records and Clinical Pathways
For many patients with complex or rare diseases, obtaining a diagnosis is a long and arduous journey. A correct diagnosis can take years, requiring persistence and often involving a multitude of medical specialists and misdiagnoses along the way.3 This can lead to patients eventually developing a learned mistrust of the medical community. After diagnosis, patients feel a cloud of emotions, all of which are influenced and impacted by their journey to diagnosis (Image 1). Their immediate experience after diagnosis, including treatment approaches by physicians, is shaped by their journey to that point, as well as by how the health care system handles them while they are processing the impact of a diagnosis. Once a physician decides on a particular treatment, a patient may be denied a prescribed specialty product based on utilization management.
Providing access to medical records can help patients feel more involved in their own care and in their treatment journey. Patients with access to their own medical records may even receive a diagnosis earlier because they often act as their own champions of care. When patients and caregivers feel more involved in their care, they may be further driven to offer any and all information to the physician to help solve the clinical problem at hand. After diagnosis, physicians should present the clinical pathways outline of possible next steps in the patient journey and discuss pathway options with them, assessing short- and long-term effects of choices. Physicians can also use the clinical pathway as a reference for why some patient suggestions for their own care may not be appropriate. Patients themselves may notice that they have already been treated with an earlier treatment on a clinical pathway, which can help inform the physician. With this approach, patients can see the broader view of their care options that physicians are already privy to, and patients will not be blindsided by subsequent steps in their care or by unavoidable consequences of some diagnoses. When patients are discharged from a hospital, they receive pamphlets about their condition and what they can expect in the future. In a similar manner, physicians can offer patient-friendly clinical pathways to guide patients in future treatments and procedures.
Let us look at a case example: patients who have been recently diagnosed with stage IV pancreatic cancer face the reality of a terminal disease that needs to be treated quickly. Their new oncologist will treat the cancer, but may also manage other aspects of the disease, such as diabetes and pain. A patient who comes prepared with their medical records from previous physicians can play a role in obtaining quicker treatment for these other conditions by passing along vital information regarding previous labs and treatments. The physician can see any patient factors that may impact potential treatment options and discuss those immediately with the patient. Use of a clinical pathway to guide choices and to refer to during shared decision making ensures that the highest standard of care is being provided, and insurers may be more likely to approve reimbursement for therapies when prescribed by a high-quality clinical pathway.
A health-literate patient who seeks to extend his or her life as long as possible will likely search for the best treatment through unreliable sources if there is no clear direction from his or her oncologist. This point is especially relevant for patients with rare and complex conditions, who will try to achieve this health literacy even with the very limited information and knowledge base they have. Presenting such patients with clinical pathways as part of their initial diagnosis visit could save them from unnecessary anguish and lessen the emotional cloud that often accompanies diagnoses.
Significance of the Patient Role
Without interoperability of medical records between health systems, patients are the best chance for the medical system to provide continuity of care when medical records from a different health system are difficult to obtain. In addition, patient-friendly clinical pathways can help patients understand when/why they can use specific treatments. By involving patients in the interactions between health systems and providing them with a broad look at their care plan, overall quality of care and compliance can be improved. Shared decision-making discussions can become truly shared, helping patients gain more trust in the medical decisions being made and in the care system as a whole.
Creators of pathways need to start thinking about these patient considerations as social determinants of health become a key to value-based care. Policymakers and the Centers for Disease Control and Prevention have acknowledged the importance of social determinants of health that ultimately impact outcomes in care.4 Even more, these social determinants of health can determine the patient’s journey in the health care system. As patient costs and experiences are increasingly incorporated into evaluation of outcomes, physicians can benefit from patients being more involved in their own care and can subsequently add this input into enhanced clinical pathway designs as well.
With the progress made in technology and in more value-based health care, the ideals advocated for by Dr Berwick in his “Escape Fire” speech may be attainable. The delivery of quality clinical care that is financially feasible by being focused on access, evidence-based care, and interactions/accountability and facilitated through open records may be here, and with it a need for clinical pathways that include a role for patients so that all these promises can be delivered.
1. Berwick DM. Escape Fire: lessons for the future of health care. New York, NY: The Commonwealth Fund; 1999. https://www.commonwealthfund.org/sites/default/files/documents/___media_files_publications_other_2002_nov_escape_fire__lessons_for_the_future_of_health_care_berwick_escapefire_lowres_563_pdf.pdf. Published 2002. Accessed April 1, 2019.
2. Shenkin BN, Warner DC. Giving the patient his medical record: a proposal to improve the system. N Engl J Med. 1973;289(13):688-692. doi:10.1056/NEJM197309272891311
3. Shire. Rare Disease Impact Report: Insights From Patients and the Medical Community. https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf. Published April 2013. Accessed March 21, 2019.
4. Centers for Disease Control and Prevention. Social determinants of health: know what affects health. cdc.gov website. https://www.cdc.gov/socialdeterminants/index.htm. Updated January 29, 2018. Accessed April 1, 2019.
5. The Patient Experience Project (PEP) Patient Journey Construct [proprietary data]. The Patient Experience Project, An EversanaTM Agency, Saratoga Springs, NY.