Us and Them: Why patient-defined health teams don’t communicate well


Patients and their families have many people who contribute to their care – different types of providers in different departments and institutions. Yet, despite sharing the goal of improving the same patient’s health, providers often don’t communicate with one another – as many patients know all too well.

Many policy makers and providers are currently trying to improve coordination among providers across the system in many different ways. For our part, we have been working on technological solutions to make it possible for patients to define who they see as their key providers, and to help those providers to communicate using accessible, secure messaging platforms.

For the past four years, we’ve been directly involved in the creation and/or implementation of two social networking applications that allow teams of providers to collaborate around the care of their patients. Loop is being tested in a clinical trial in advanced cancer patients, with the patient and designated caregiver(s) as full participating members in the conversation, meaning they see and can comment on the discussion in real-time. The other platform, Clin-CT, is aimed at Community Care Access Centre’s Integrated Care Teams, teams of providers that create a collaborative plan driven by the patients’ goals.

Both projects attempt to enable collaboration in real world teams, and both are currently evaluating how those tools impact team function. The implementation of each tool has been met with remarkably similar challenges. As we soon found out, virtual care is not a Field of Dreams; if you build it, they won’t necessarily come.

During the recruitment phases of both projects, one thing became apparent: health professionals define for themselves who they think the “core” and “peripheral” members of the team are. Each health professional may have a different definition of who their team is – and these definitions don’t always align with how a patient and family define their team.

Health care organizations often define teams as staff who work together in the same organization, with the same group of patients. But patients define their team differently: their ‘team’ might include a nurse in a diabetes clinic, a dietician in a dialysis unit, a pharmacist in a community pharmacy, two specialists at different hospitals and a family physician in community practice. This discrepancy underpins many of the barriers we encountered in implementing patient-centered, holistic care plans.

For example, we noticed that CCAC coordinators and clinical staff were communicating among each other and with their primary care partners but were reluctant to contact, say, the patient’s cardiologist – even though there were no technological restrictions from doing so. With Loop, oncologists may link with palliative care physicians and nurses about cancer care, but a diabetic patient’s endocrinologist might not be updated about the patient’s cancer treatment.

As we looked deeper, the “us” and “them” issue showed up everywhere: private and publicly paid workers, those connected to institutions and “free agents”, and home care providers working directly for the CCAC versus providers contracted by the CCAC. The major problem was one of engagement: as in any industry, people who don’t view themselves as part of a team don’t engage with that team.

Technology to support collaboration among a patient’s health care team will not be successful unless we concurrently tackle how to broaden health workers conceptions of teams. These efforts are needed more than ever. The number of patients with multiple chronic conditions grew by 40% in Ontario between 2002 and 2009, representing more than 85% of health care spending in 2009. Numerous reports show care coordination for these “high-cost users” of the system is difficult and requires novel solutions.

The cost of joining a team

As we have suggested, health workers may prefer to work with people they know. But that doesn’t wholly explain the reluctance to collaborate.

In our efforts to implement team-based communication tools, we saw firsthand that being part of a team has its costs. In health care teams, costs might be as simple as time-consuming sign-up procedures. But they can also be more entrenched: unpaid extra tasks for members who are already overextended or uncertainties over the privacy implications of novel modes of communication, for instance.

Many factors in Ontario’s current system increase the costs of engaging with inter-professional and inter-institutional teams: inadequate training and experience with team-based care, silos of care, deficient infrastructure to support teams, and inadequate reimbursement for coordination tasks. Incentives can also be frankly misaligned with some team members rewarded for quantity of tasks when others are rewarded for comprehensiveness and quality of tasks. For example, a primary care provider in a family health team is implicitly incentivized to ensure care coordination, whereas a fee-for-service specialist will have no fee code to participate in this same activity. At other times, even though cross-institutional members may want to collaborate, restrictive privacy and security policies make it cumbersome, or even impossible, for them to do so. In both tools we have developed, there were moments when solo primary care providers were considered too high of a privacy/security risk to be included – ultimately the rationale that they were perhaps the most important member of the team won the day, but not without pushback.

Our experience from these two initiatives leads us to a number of recommendations of how the system can better support patient-centred teams:

  • Engage the patient/family/caregiver in the definition of “their” team
  • Reduce system barriers that inhibit effective teams such as misaligned incentives as noted above, conservatively interpreted privacy/security rules that prevent necessary communication between legitimate “teammates” in a barrier-free way, and strict professional definitions of “in-scope” activities.
  • Create formalized teams only for those who need them, whether supported by technology or not – the costs involved in creating teams can be significant, and not all patients require complex multidisciplinary collaboration.
  • Provide shared, secure spaces for teams to collaborate and, perhaps more importantly, build trusting relationships.
  • Require that teams establish shared goals through a process that involves all key stakeholders, including patients and their caregivers.
  • Avoid being overly prescriptive about roles and responsibilities, especially unneeded “scope of practice” restrictions or the belief that all teams must be physician-led. (For example, a successful palliative care team in the United States found that the chaplain was the most natural and effective leader for clinical care meetings.)

Before technological solutions such as Loop and Clin-CT can truly be useful, teammates must first view themselves as a unit. Despite the right intentions and design, our tools struggled to gain traction because of the lack of a harmonized concept of the team as one, unified, patient-centric entity.

Our patients and families will not thrive in a health system built on erroneous ideas of “us” and “them”. If promising pilot projects are to become indispensable tools in clinical practice, we must stop defining “us” according to workplaces and hierarchies and start defining “us” in ways that work for the patient.

Trevor Jamieson (@DrTJamieson) is a general internist at St Michael’s Hospital and Virtual Care Lead at the Women’s College Hospital Institute for Health Systems Solutions and Virtual Care (WIHV).

Alexis Villa is a Senior Project Manager at University Health Network working in partnership with the TC-CCAC on the Information Management and Information Technology strategy. 

Amna Husain is a family physician practicing in palliative care and the Research Lead for the Temmy Latner Centre for Palliative Care.

Stacey Daub is the Chief Executive Officer at the Toronto Central CCAC. 

Jodeme Goldhar is the Chief Strategy Officer at the Toronto Central CCAC.

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14 comments

  1. Dr. Franklin Warsh

    These are great ideas to pilot (and hopefully use for the long term) in environments where care coordination has a good chance of success. Palliative care is probably an ideal setting.

    There are serious problems with the team-based ideal, and this is coming from my own experience at a CHC where the odds of success in primary care are probably highest. First is the loss in “productivity” that team based care entails. When quotas aren’t being met to the satisfaction of funding agencies, or FFS income is curtailed, it’s hard to justify so-called “10,000 dollar meetings”, even if those meetings are held electronically.

    Second is the unrealistic expectation that the prospective team will have the mix of competency, collegiality, and leadership to work well together. Each centre and agency has its own priorities and needs when hiring. A terrific nurse practitioner won’t necessarily have the ability to run a meeting or be comfortable with IT. And the more dollars spent on putting those skills in place (IT support, leadership training), the more is diverted away from patient care.

    Finally, there needs to be a commitment on the part of payers to make it work. I’ve seen my patients go along swimmingly until their home care service is unilaterally cut by the local CCAC without warning or explanation. It’s weeks before the issues could be resolved, and in the interim the patients’ health suffers, resulting in increased use of our services and visits to the ER. These debacles happen all the time, and all because somebody decides to trim one line of a budget without thought to the (many) other lines.

    • Trevor Jamieson

      Dr Walsh,

      Your examples solidify the point.

      The 10K meetings you mention are often a factor of people creating complex team structures for patients who would likely do well regardless – with the people who truly need them, I would argue it’s often the case that either (a) necessary tasks aren’t being done at all, so the extra effort is a good thing or (b) the lack of coordination creates inefficient and redundant efforts across the team so more formalized structures can make things easier for everyone. At least that would be the hope.

      On the second point, I would argue that that proves that the system is often geared towards the priorities of centres and agencies than patients. This is one of our main arguments – that these structures create insiders and outsiders on the care team, imply rigid role definitions that prevent people from picking up tasks that don’t fall into anyone’s job definition, and through conflicting incentives create conflicting priorities.

      Trevor

  2. Sarah Newbery

    Thank you for your article…it considers some of the very important challenges have been raised about defining teams from both provider and patient perspectives. You note: “Health care organizations often define teams as staff who work together in the same organization, with the same group of patients” and that is, I think, the most common perception of teams. A challenge not fully described in our system is that teams need not be static entities and the notion of
    “teaming” becomes an important one in terms of how patients define their teams. Teams of providers and caregivers ebb and flow and often change, even for the same patient, depending on disease(s), trajectory of illness at a particular point in time, and evolving goals of care. Technological solutions can facilitate communication but the ‘teaming attitude’ depends on the users and not just the platform.

    What is central to the patient-centred team across settings is the concept of care coordination – vertical and horizontal care across the health system. Care coordination can ensure continuity of care for patients regardless of setting, including home, community, hospital, long-term care facility or their family practice. In addition to your recommendations, good care coordination should not happen off the side of the desk but needs to be supported with leadership, dedicated funding and training. To be truly patient-centred, training support may also be needed by the team the patient identifies which may include family, friends or colleagues.

    Technology, apps, websites are all wonderful tools, however teams and ‘teaming’ relies on a human touch.

    Thank you again for sharing your work, and providing an opportunity to explore your experiences with trying to facilitate the development of teams in support of patients.

    • Trevor Jamieson

      Sarah,

      Virtual teams have been around in other industries for years, and, unless team structures, roles and tasks are fairly deterministic, the secret sauce, as you imply, is rarely technology, etc. but trust. Unfortunately, for the patients who need care coordination the most, the tasks are often anything but deterministic. Doubly unfortunate, trust doesn’t just come out of thin air – it takes time. When you’re in a situation where 10 patients could have 10 different teams, you really have to wonder how trust ever occurs.

      Part of me is curious if and how these new technologies can facilitate trust and communities. Another part of me is curious if and how these technologies, if unchecked, might actual lead to the erosion of trust and community through a consultation dispersion of convenience.

      Trevor

  3. Trevor Jamieson

    Bringing people’s attention to a perfectly timed article in Health Expectations that would have been a great reference for our piece:

    LaDonna et al. ‘Who is on your health-care team?’ Asking individuals with heart failure about care team
    membership and roles. Health Expect. 2016 Feb 29.

    http://onlinelibrary.wiley.com/store/10.1111/hex.12447/asset/hex12447.pdf;jsessionid=8477C9F215467B7B4DAA631EC21C508C.f03t02?v=1&t=imai0z8u&s=d3ba301a4c3883769ac93e297cd28f67f7b84e2d

  4. Charmaine Jensen

    I have been subscribing to healthdebate.ca for a few years now and am more than thrilled that I received this blog post in my inbox. I do hope that some time in the future we will have an online portal within which our PCP (primary care physician), i.e. community mental health nurse, and any other persons that are part of my care team can all communicate on a portal.

    I just managed to get myself a new PCP June 2015 and this one was willing to team up with my surgeon of 18 years…. and my psychiatrist and my mental health nurse and other important health care team members.

    Unfortunately due to a former pcp ignoring health issues of mine and not willing to refer me to a surgeon of my cho0sing… my health has to decline to where it is that I have to get my gall bladder out on April 7th and I have become quite ill.

    I will be looking forward to an update to this in the future.

    Charmaine Jensen

  5. Don Taylor

    Thanks for this timely reflection and thoughtful comments.

    Unquestionably, healthcare teams are important to effective health care delivery and healthcare providers have much hard work to do to get good at creating – and sustaining, effective healthcare teams.

    What doesn’t seem to get much attention in discussions is the patient’s responsibility in making the team effective. After all, the patient as a member of their own healthcare team ought to know what/how they are to contribute to the team and bears some responsibility for its effectiveness.

    • Amna Husain

      Don, thank you for your thoughts. I find that patients and their families bear a significant burden of the responsibility for ensuring that their healthcare providers are informed and that their care is coordinated. I do think they make us work more effectively as teams. I believe the role of patients and families is growing. Whether or not we in healthcare take the initiative, patients will drive healthcare transformation. It will simply become unacceptable for us not to work as coordinated collaborative teams using all the tools at our disposal, including information technology.

  6. John Moore

    While the Ministry’s Patients First initiative is much broader than patient health teams- is it true that the obstacles you describe must be overcome in either case to get to a truly “patient centred” vs. provider centred heath system? In fact, these barriers are possibly at the core of successful change.

    The tool to support the process is necessary, but not sufficient. But the design of the tool would have a focus on reducing the amount of expensive conferencing. Just having the capability of an alert to a recognized team that something about the patient has changed is a giant step forward.

    • Amna Husain

      John, the barriers we encountered are the same barriers that must be tackled for delivering care that follows the patient’s course throughout the health system, engages the patient, and considers the patient’s goals for their care. And I agree, deploying some simple, well-conceived solutions system-wide could potentially have huge impact, even if just to challenge the way the system is currently organized.

  7. Wendy Nicklin

    Excellent article and raising a realistic challenge that has to date not been openly discussed. Our definition of the team or the patient’s and how these reconstruct that model. If we truly plan to provide patient focused care with the patient as a genuine partner then the care design must follow the patient’s health journey across the system and thus utilize the team that is key throughout this picture that is being woven.

    • Linda Murphy

      I think that this article touches on an important issue but I would like to see more information on what and how data would be shared usefully. I am reminded of one of many episodes supporting my Dad who suffers from vascular dementia that I hope will illustrate what I mean by this.
      I was notified by phone by Dad’s retirement home that he had been sent to the emergency department of a local hospital from his retirement home. I met him there as he arrived with a compression fracture in his spine. He spent close to four weeks between the emergency, medical and Transition to Home wards – always transferred on a Friday. He lost 17 pounds and his usual vibrant interest in life while there. His dementia kept him only minimally active in hospital routines. He left hospital able to walk short distances with a walker, but weak, badly disoriented and depressed.
      I met and collaborated with many fantastic nurses, attendants, social workers and medical staff at the hospital although there were a few outlyers.
      I cannot overstate the level of ongoing effort required from me to ensure that all staff rotations working with my father understood that he had no short-to-mid term memory/recall and to outline other information key to his care. I was even more stunned at the effort required to get a formal recovery plan for him before discharge. Given the name of the ward and transition program – it seemed self-evident that this type of plan would be essential for his recovery and to reducing Dad’s risk of another fall and hospitalization.
      Although the social worker assigned to Dad changed several times during his stay, I was fortunate with the dedication of the one who ‘developed’ a discharge plan by reviewing his detailed chart together with me. We did this by reviewing and jotting notes from the large binder used to store all the charting, lab results and comments of various staff involved in Dad’s care.
      It certainly opened my eyes to how challenging it is for staff to develop a good sense of patients – there wasn’t even a summary page with key info to orient new members of the team assigned across shifts or disciplines especially when patients present with multiple health problems and may end up moving between wards for health and budget reasons. It seems to me that flagging ‘no short-term memory’ might have been a good note and that capturing information key to discharge plans on a single page should be routine.

      • Amna Husain

        Linda,
        Thank you for your thoughtful and gracious description of what was clearly a very difficult time. You illustrate so effectively the problems in our charting, our communication, and care transitions. We have long known the problem with the way paper charts are organized. In many instances, this problem has simply been carried forward when we translated paper charts to digitized electronic health records. I think we need to consider communication and coordination between shifts, hospital wards, doctors, nurses, social workers, community providers, patients and families as a core clinical activity. The “one who developed the discharge plan” took on this activity. A system of charting individual healthcare providers’ notes is not enough. Effective communication, sign-out, and transition planning tools along with effective implementation strategies are needed.

    • Amna Husain

      Thank you Wendy. Your conclusion is exactly what we have found- as you say, we must follow the patient’s health journey across the system. The team-building strategies and tools we implement have to be dynamic and flexible, so that teams can be assembled in a timely way, they can evolve to include all the members of a patient’s team and can be self-monitoring over time. We are aware of how difficult this is to achieve in the current fragmented healthcare environment, but must continue to strive for it.

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