Most people don’t have serious health conditions, but most of us have close friends or family members who have or have had conditions involving multiple healthcare professionals and caregivers, often with multiple organizations. The 20th century brought advances in medical care, including the discovery of vitamins, development of antibiotics and advances in surgery. In the 21st century, advances in communication and information management are changing the dynamics of clinician-patient-caregiver relationships, giving more importance to patient preferences and involvement in their own care. As we strive to manage healthcare costs and improve the patient and caregiver quality of life, better information technology is being developed to make that happen.
Patient and Family Centered Care. Patients and family members are demanding more access to their medical data, but proposed solutions have been slow to appear. Contrary to predictions, Blue Button downloads have not been available from most healthcare organizations.  In fact, consumers, patients, family members and even clinicians are often not aware of this capability and how to utilize it. Especially for patients with serious, ongoing health problems, the need to access that information is becoming acute as more and more care happens outside institutional walls where patients are responsible for managing their own care.  Datuit is developing technology to facilitate not only clinician-clinician data sharing but also clinician-patient data sharing as well.
Bridging the Gap: Patients and Clinicians in Complex Care. Patients and families have been speaking out about inadequacies in their current systems. Many times clinicians recognize how poorly their friends and families fare because of issues they have not been aware of in their clinician roles. For example, Amy Compton-Phillips describes her elderly mother-in-law’s unanticipated complications – they look predictable in hindsight, but it’s all too easy to see how the scenario unfolded. Each healthcare layer did their part without realizing the impact on the entire experience. 
These days family caregivers are becoming more important in helping manage the care of loved ones. The AARP Public Policy Institute conducted a survey of family caregivers to determine their activities and ultimately to identify their needs.  Their recommendations include major changes in the ways healthcare professionals assess patient needs and work with them to meet those needs.  And they include developing more assistance for families to cope with the tasks they’ve been given.
Physicians are also learning to deal with the changing healthcare environment. Because of tight schedules, physicians and other clinicians often see complex care patients with whom they aren’t familiar. A recent article tells how a physician has learned to navigate this difficult landscape by asking, “What are the goals for your care, and how can I help you?”  And learning how to work with other clinicians and other organizations will also help coordination be more coordinated. 
Chronic Care Management Service. In order to improve quality and reduced costs, CMS now encourages physicians to provide Chronic Care Management services for Medicare beneficiaries requiring complex care. Although it is available to primary care physicians as well as specialists, only one can receive payment for this activity, and patient consent is required. In addition, an electronic care plan that can be shared with other care team members, including the patient and any home and community care service providers, is also required. The information shared must include problems, medications and goals, interventions (including preventive care), symptom management and a plan to coordinate with others and manage medications. 
Patient-centered medical homes (PCMHs) are designed to carry out care coordination, but they may not have the tools to support it. The Health Information Technology Evaluation Collaborative (HITEC) and Weill Cornell Medical College conducted a study to determine what health information technology (HIT) is needed to support care coordination. They identified five areas where PCMHs studied lacked needed functionality:
- Monitoring tools to identify patients needing care coordination services;
- Notification capability to alert them when patients experienced transitions of care;
- Collaboration tools that linked various clinicians and patients into a communication framework;
- Reporting tools that could extract data from multiple sources; and
- Interoperability/data sharing capability that could bring data from multiple organizations and sources.
They concluded that “existing health IT needs to evolve from a digitalized patient record repositories into interoperable electronic collaboration platforms that support both individual patients and patient populations to enable PCMH care coordination efforts.”  Datuit’s SafeIX Platform and Care Plan Manager (CPM) are developed to help facilitate transition and offer information sharing and communication tools to clinicians and providers.
How will Chronic Care Management help patients and families? A conference held in late 2014 to develop a framework for the “Triple C” – compassionate, collaborative care. The sponsors published their recommendations, which starts with “involv[ing] patients and families as partners in health professional education, their own care and in co-designing healthcare delivery.”  They went on to define compassionate and collaborative care as an equal partnership of patients, family members and healthcare professionals. It means that when patients choose to be involved, “healthcare professionals must share information and strive to facilitate patient and family participation as their comfort allows.”  The report concludes that efforts to bring in patients and families are necessary for “The Triple Aim” of improving patients’ experiences of care, their health and lowering costs to be realized. 
Patients and families need more and better information and communication channels so they can obtain answers to questions and solutions to problems in a timely way. For cancer patients, having timely access to good information has been shown to reduce ER visits and hospitalizations because symptom management can be handled by the patient and family at home.  In a first of its kind pilot, Datuit is partnering with Connected Health Resources to help patients and families better communicate with their clinicians, physicians and others they may want to include in their care teams. Patients and families can more easily find the necessary health and social services to help them stay in their homes with more support and fewer miscommunications and complications. This can result in improved satisfaction and fewer ER visits and hospitalizations.  With better communication, patients and families can be prepared for anticipated issues and manage unanticipated issues more effectively. Sharing data among clinicians and with patients and families is essential to facilitate this level of care coordination.
As clinicians, patients and families gain experience with these new tools, finding the most appropriate resources will become easier. In this way, some of the burdens of having a serious medical condition will be relieved – for patients and family caregivers as well as their healthcare providers.
 Gropper A. ONC Signals a Shift From Documents to Interfaces. The Health Care Blog (December 7, 2014) Accessed at http://thehealthcareblog.com/blog/2014/12/07/onc-signals-a-shift-from-documents-to-interfaces/.
 Riccardi L. Getting Your Own Health Records Online: The Good and the Not So Good. The Health Care Blog (October 14, 2014) Accessed at http://thehealthcareblog.com/blog/2014/10/14/getting-your-own-health-records-online-making-sense-of-blue-button-meaningful-use-and-whats-going-on-in-washingto/comment-page-1/.
 Mate KS and Compton-Phillips AL. The Antidote to Fragmented Care. Harvard Business Review (December 15, 2014). Accessed at https://hbr.org/2014/12/the-antidote-to-fragmented-health-care.
 Reinhard SC, et al. Home Alone: Family Caregivers Providing Complex Chronic Care. AARP Public Policy Institute In Brief 199 (November 2012). Accessed at http://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2012/home-alone-family-caregivers-providing-complex-chronic-care-in-brief-AARP-ppi-health.pdf.
 “This challenge requires coordinated efforts of all sectors – hospitals, home care agencies, community agencies, nursing homes, hospices, and physician and other clinician practices – and a level of teamwork that challenges attitudes and behaviors firmly entrenched in the current system.” Ibid. at page 3.
 Kaminski M. How I discovered an important question a doctor should ask a patient. Washington Post (March 9, 2015). Accessed at http://www.washingtonpost.com/national/health-science/how-i-discovered-an-important-question-a-doctor-should-ask-a-patient/2015/03/09/ca350634-bb9c-11e4-bdfa-b8e8f594e6ee_story.html.
 Span P. The Tangle of Coordinated Health Care. International New York Times (April 13, 2015). Accessed at http://www.nytimes.com/2015/04/14/health/the-tangle-of-coordinated-health-care.html?ref=science&_r=2. Creating more siloes of information can make coordination worse, not better, because no one knows who’s in charge of coordination.
 Chronic Care Management Services. Department of Health and Human Services, Centers for Medicare & Medicaid Services Medicare Learning Network ICN 909188 (January 2015). Accessed at http://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/Downloads/ChronicCareManagement.pdf.
 Richardson JE, et al. A needs assessment of health information technology for improving care coordination in three leading patient-centered medical homes. J Am Med Inform Assoc online first (March 21, 2015). Accessed at http://jamia.oxfordjournals.org/content/jaminfo/early/2015/03/20/jamia.ocu039.full.pdf.
 Recommendations from a Conference on Advancing Compassionate, Person- and Family-Centered Care Through Interprofessional Education for Collaborative Practice. The Arnold P. Gold Foundation, The Schwartz Center, The University of Chicago Medicine, Josiah Macy Jr Foundation. Atlanta, Georgia (October 30-November 1, 2014). Accessed at http://humanism-in-medicine.org/wp-content/uploads/2015/03/TripleCConferenceRecommendations.pdf.
 Ibid. at page 6.
 Ibid. at page 16.
 Eagle D and Sprandio J. A Care Model for the Future: the Oncology Medical Home. Oncology (June 13, 2011). Accessed at http://www.cancernetwork.com/practice-policy/care-model-future-oncology-medical-home.
 MaryAnne Sterling from Connected Health Resources and Gordon Raup from Datuit will be presenting at the HIMSS MN 14th Annual HIT Spring Conference May 21, 2015. Information available at http://files.ctctcdn.com/aa417de0201/5b42315c-cb73-4e0d-9c5c-10ff5df8e60b.pdf.