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Collaboration in rehabilitation

On Tuesday, 6 September 2022, I gave a lecture at the Muscular Dystrophy Foundations conference center, Musholm, Denmark on, “Multi professionalism in rehabilitation – collaboration in the clinic and across sectors and ‘ownership’ of the patient.” In Denmark, children with muscular dystrophy can have a two-week annual rehabilitation review in a residential centre. One issue immediately struck me: does anyone own the patient, and if so in what way? Leaving that linguistic issue to one side, the question can be reframed as, “How do we ensure that the patient’s needs are met in a consistent manner, over time and in different places without gaps, delays, or other avoidable stresses for the person and their family?” I will discuss the question and the issue in this post. There is no easy answer. The fundamental problem is that rehabilitation is a complex system working within a complex model, the biopsychosocial model of illness.

Table of Contents

Introduction

Complexity dominates all healthcare. Complexity is characterised by non-linear relationships between factors, interactions between different factors, and interdependence between factors.

The greatest complexity arises in specialities that take a holistic approach, such as rehabilitation, psychiatry, geriatrics, general practice, palliative care, and paediatrics. All use the biopsychosocial model of illness, a complex system; it has at least eight subsystems and a huge number of factors are involved.

Rehabilitation depends on many services from separate organisations providing interventions to help the person adapt; they form a complex system. The funding of these services is complex, and rehabilitation is usually only a small part of each budget and is typically considered exclusively a healthcare responsibility. Non-healthcare organisations provide many crucial interventions, leading to disagreements about funding and responsibility. Each managing organisation and budget has independent priorities, procedures, culture, and jargon.

This fragmentation of actions, responsibilities, services, and budgets leads to the patient frequently failing to receive the support needed or only receiving a fraction of it after long delays. The Danish group were seeking an answer!

Why is complexity a challenge?

The complexity of health care was recognised 25 years ago. For example, the British Medical Journal published a series of four articles in 1991. It follows from the fragmentation of clinical activities. For example, a person may have input from several clinical expert services such as neurology, neurosurgery, and oncology, and may use many ancillary services such as radiology, dietetics, and clinical psychology, and may also need help from community services such as community nursing, social care, and housing adaptations. Each of these may have their budget allocated for circumscribed reasons and people leading to particular priorities.

This fragmentation evolved as activities required more expertise and were provided by specific people, teams, and services. The model used by manufacturing seemed appropriate, with many separate services contributing to the patient’s investigation and treatment. Unfortunately, the production line analogy is flawed because most patients have different specific needs. One proposed solution was the incomplete development of pathways to mimic the industrial approach. This was also inappropriate as most patients will not need the suggested path, leading to a waste of resources or inefficiency.

A second reason for fragmentation was healthcare’s and Society’s dependence on a reductionist approach using the biomedical model. Healthcare focuses on the disease, not the person. Though people recognised the problems associated with fragmentation of expertise, requiring doctors (and services) to retain more generalised knowledge and skills (see the Shape of Training), no one addressed the issue of silos in healthcare.

The electronic patient record was expected to improve matters. However, a study of electronic patient records by Nengliang Yao and colleagues revealed the complexity of healthcare. They studied over two million records of 6,800 patients with newly diagnosed colorectal carcinoma in an American healthcare organisation. The patients were involved with 150 professionals. Visual images convey the complexity of single patients. Other analyses showed the vast range of interactions and the low likelihood of inter-professional communication.

They concluded, “1) team structures are not simple, 2) team structures vary greatly across patients, and 3) leaders cannot rely on serendipity to ensure team formation and optimal interprofessional care.”

Thus, complexity is a challenge in all healthcare, even when concentrating on a biomedical approach to disease control, such as the example above. The challenge will be magnified in rehabilitation because it focuses on the person and their functioning, not the disease.

Collaboration: shared responsibility

Collaboration in rehabilitation

shared responsibility

Before discussing improving patients’ experience and ensuring they receive comprehensive expert input where effective interventions exist, I must delineate my assumptions. These are axioms, “statements or propositions which are regarded as being established, accepted, or self-evidently true”. [OED]

Axiom one

Rehabilitation is

“a systematic series of assistive and catalytic interventions guiding the natural adaptation process, enabling the person to achieve and maintain their psychosocial equilibrium against set points in each domain of need.”

Needs are derived from Maslow’s five domains of motivating needs, but they could be reframed using any comprehensive model of high-level outcomes that all people use to give meaning and purpose to their lives. The essential features are that rehabilitation:

  1. is an expert service that
  2. facilitates the natural process of adaptation to changes in a person’s life, through one or more actions:
    1. giving information and advice
      1. diagnosing the factors that cause or exacerbate the initial change
      2. identifying actions that might help adaptation
    2. developing a plan of actions needed
    3. Teaching the person new activities or helping them relearn or practice activities
    4. Optimising their environment, directly or indirectly
  3. Organises or provides care to preserve safety and well-being, while still
    1. facilitating adaptation

Axiom two.

Rehabilitation is

  1. “a multimodal, person-centered, collaborative process including interventions targeting
    1. a person’s capacity (by addressing body structures, functions, and activities/participation) and/or
    2. contextual factors related to performance
  2. with the goal of optimizing the functioning of
  3. persons with health conditions currently experiencing disability or likely to experience disability, or persons with disability”

This definition is derived from a systematic review of many others. Although I have criticised the attempt to define rehabilitation in a legalistic and definitive way, the definition covers the crucial features.

One point is implied but not made clear: functioning (in (b)) encompassed “body structures and functions, activities and participation” as described in the World Health Organisation’s International Classification of Functioning. Thus, rehabilitation vitally includes social function.

Axiom three

Rehabilitation is:

  1. effective in all conditions and settings and at any stage of an illness
  2. based on the biopsychosocial model of illness and an expert multi-professional team
  3. person-centred, with multiple interventions tailored to their needs and priorities

I undertook and published a narrative review establishing these features of effective rehabilitation.

Implications of assumptions

In other words, rehabilitation is holistic and starts with and concentrates on the person whose situation has been disrupted by illness, aiming to help the person establish a better life. Naturally, an essential part of this process is considering the person’s disease because controlling or reversing any internal disease process may restore the person’s equilibrium. In practice, treating disease often fails to restore the person’s stability. Therefore, rehabilitation must also consider all other aspects of a person.

Biomedical healthcare, in contrast, concentrates on identifying the disease (as the cause of the illness) and treating it; the service has no other goal and absolves itself of responsibility for the broader consequences of the disease. The people in the service are usually aware of and concerned about broader issues but have little expertise and no allocated health resources.

The risk of concentrating on disease rather than the patient was understood over a century ago, even though systems were incomparably less complex. William Osler (1849-1919), a Canadian Physician who had a significant and continuing influence on medical education, summarised the difference between a biomedical and a biopsychosocial (i.e. rehabilitation) approach to illness in two aphorisms:

  • “Ask not what disease the person has, but rather what person the disease has” and
  • “The good physician treats the disease; the great physician treats the patient who has the disease.”

In summary:

  1. Biomedical healthcare is complex and has not yet developed ways to ensure safe, seamless, and effective coordination of care.
  2. Rehabilitation is more complex because
    1. it involves more interventions from more services and organisations, including non-healthcare organisations,
    2. there is more uncertainty when diagnosing causal or predictive relationships.
  3. Biomedical and biopsychosocial healthcare are both hindered by fragmentation of services and budgets primarily by:
    1. Organ systems and disease, and/or
    2. Specialised services focused on an aspect of a patient’s needs.

Thus, all healthcare fails to be person-centred; Tiago Jesus and colleagues drew this conclusion in 2022.

Shared responsibility for rehabilitation is essential for a patient to receive seamless and consistent rehabilitation without delays or gaps. Shared responsibility depends on all patient services being patient-centred; although all services have other concerns, being person-centred must be the main priority. If they share being person-centred, collaboration in rehabilitation is much more likely. However, the evidence above suggests each service gives a higher priority to other matters, usually financial. Thus, all healthcare fails to be person-centred; Tiago Jesus and colleagues drew this conclusion in 2022.

The challenge

A radical reorganisation of health and social care services and budget is impossible. They have evolved over the last century, and although we would design them differently if we were starting from scratch, a single radical revolution would not work. How should we progress?

In their review of person-centred rehabilitation, Tiago Jesus et al. noted that person-centred care was often present, albeit not totally, at the micro-level (i.e., patient-professional level) and meso-level (i.e., team or service interaction with a patient). They considered that it could not be the usual practice unless the macro-level system (i.e., healthcare organisation) became fully committed to person-centred care.

They wrote,

“Health care organizations often operate within a biomedical paradigm; indicators of success are often service-centered (eg, reduced length of stay), which drives goals and behaviors often inconsistent with person-centred rehabilitation (eg, to discharge patients quickly).9Sometimes, it takes whole organizational shifts to move from service-centered, disciplinary-based “treatments” to person-centred rehabilitation. Organizational redesign can empower professionals to exert accountable, self-directed work that follows the persons’ priorities;  for example, professionals would be able to spread out intervention sessions over time for the person to have the chance to practice at home, if desired, and could honor person’s preferences in scheduling follow-up visits. Organizational challenges for professionals to deliver person-centred rehabilitation may include high caseload, understaffing, staff turnover, reimbursement based on procedures/visits, or narrow focuses on self-care activities.”

Therefore, the challenge is to alter the principles and attitudes of healthcare organisations. One might fear that society’s attitudes must change so that non-healthcare organisations and politicians drive the change. However, politicians and policymakers would likely follow suit if healthcare organisations became person-centred.

The solution - adaptive networks

A revolution will not succeed. Moreover, leaping into a new but fixed structure may solve problems for a while. However, further changes in healthcare, social structures and policies, and other areas will soon render a new fixed design redundant. We need an organisation that can adapt to change; the current organisations are slow at adapting individually, and there is no meta-organisation to ensure whole-system adaptation.

The solution is to have a system that can evolve, adapting to changes. Evolution must be built-in or, at a minimum, facilitated by the design. Rehabilitation and all healthcare needs to be situated within a complex adaptive system. These have been discussed for many years. For example, the Healthcare Foundation reviewed over 100 articles in 2010 and produced a report about complex adaptive systems in healthcare, and Joachim Sturmberg and Johannes Bircher discuss how this approach may reduce costs and improve services.

Healthcare teams are an example of a complex adaptive system. Peter Pype and colleagues analysed groups of clinicians delivering palliative care. They showed that the group had the characteristics associated with a complex adaptive system and in table one, they said: “The actions and interactions of team members are influenced by a set of basic rules as described earlier. Rules push a team member towards a certain action. As a mirror image, attractors attract team members towards a certain action. The trajectory of a team (i.e. the usual pattern of behaviour) is for a great deal determined by its attractors. The precise behaviour of a team on a precise moment is still unpredictable but the ‘usual’ behaviour will always incline towards the attractors.”

A network is equivalent to a team, except that the units are services, not individuals.

Step 1; local rehabilitation networks.

The Community Rehabilitation Alliance recommends that localities “Establish a local provider rehabilitation network on a regional footprint to include primary, secondary, tertiary health care, mental health, social care, independent and third sector providers.” To ensure this happens, they also recommend that “Health Boards should designate a director at executive level with direct responsibility for rehabilitation services, if this is not automatically the Director of Therapy.” This is the crucial first step.

Unfortunately, they also refer to a rehabilitation directory, and some health boards may feel that these are cheap and easy alternatives. They are not.

A directory is not a network

Directories of available rehabilitation services across health, social services, and other services were suggested as a crucial development of trauma rehabilitation services when initiated in 2012. However, the Department of Health provided no resources – people or information technology – and no guidance. Despite much effort, no useful directories emerged for many reasons, such as:

  • No agreement on what services should be included or what data should be in the directory
  • No mechanism to keep information up-to-date and accurate
  • No incentive for anyone to join or provide data
  • Each organisation had different ideas, wishes, expectations etc

A directory was the wrong solution, just as having a dictionary will not enable one to write a letter. No one had considered why or how a list of possible resources might help because no one had considered what the problem was. [It was like starting rehabilitation without any initial analysis and formulation.]

A service with a patient needing rehabilitation faces many difficulties, such as knowing:

  • what services are available locally
  • whether a rehabilitation service might help and
    • How to contact them for more information
    • What information they might need
    • The referral process
  • who else to approach if the first service cannot help

Sometimes, someone in the patient’s clinical team knows a local rehabilitation expert and will contact their colleague and ask, but this is serendipitous and not a good approach.

A network is more than a directory. It is a group of individuals or services who link and participate as equals in an activity extending beyond their activities. In rehabilitation, the steps currently go from patient-therapist to patient-team activities. A network adds a further, more extensive level of interaction between a patient and a collection of teams (the network).

The teams within a network must share a common understanding, language, set of goals, policies, etc.

Thus, a network requires members to discuss and agree on language, procedures governing interactions, purpose, and many other things. This starkly contrasts with a passive directory that does not require any commitment from the people or services included. Members must agree upon the nature of the commitment.

A network exists for the mutual benefit of members, so every member needs to contribute and can expect to benefit. For an individual member, the contribution and benefit need not be reciprocal; a service may contribute expertise, advice, and education and benefit by having a greater throughput of patients. Nonetheless, there is a commitment, which may include resources such as supporting an administration, but most matters will rely on trust that all members act responsibly and respect each other.

The details of rehabilitation networks are covered in two blog posts.

The first concluded:

“This overview of the issues facing rehabilitation service delivery leads to the following hypotheses:

  1. When he drew up plans for Social Insurance and Allied Services, William Beveridge envisioned healthcare (the NHS) as only one part of five national social services; he stressed that each was only one part of a comprehensive policy of social progress.
  2. The dominance of the biomedical model in 1948 led to its separation, based on a model of short acute illnesses with a single cause and cure, with no consideration of other health-related problems. Rehabilitation was expected to be undertaken by the disease-focused services.
  3. Specialisation led to the fragmentation of healthcare services focused on disease.
  4. The healthcare systems adapted by forming teams and a few networks.
  5. The current problems arise from the complexity of
    1. The patients’ problems
    2. The services needed
  6. The patient’s complexity is managed using the biopsychosocial model of illness.
  7. The complexity of services spanning many teams, organisations, and social care systems might be resolved by focusing on the relationships between services and ensuring an overall strategy for all services.
    1. This description applies to a clinical network.”

The second concluded:

“In this post, I have worked through some of the many practical matters to be considered when setting up a rehabilitation clinical network. These are untried suggestions, and other approaches may be better. Whatever method is used, I have suggested that the principles of the network are straightforward.

  1. The crucial principle is that the services must initiate the network, which will probably fail if set up by higher tiers of management.
  2. The second vital principle is that a network must be a collaborative, cooperative, and trusting organisation with no single powerful agent controlling it.
  3. The third essential feature is developing simple rules and processes focused on service relationships. There needs to be an agreed set of strategic goals, but the network members must be involved in setting these and be allowed to organise how they are implemented. Reaching this nirvana will take time and effort.”

Step 2: expand the network membership

The first members are likely to be specialist services, such as nominated level I and II rehabilitation services and other specialised services covering, for example, wheelchairs, prosthetics, orthotics, and other assistive technologies, paediatric and geriatric disability services, and psychiatric rehabilitation.

Hopefully, once a central core has become established, many other relevant services will join, including:

  • social services (community occupational therapy, sensory impairment services),
  • specialised nursing homes,
  • privately managed rehabilitation services, and
  • non-statutory services such as Headway.

After that, the network may wish to look for other services used regularly by patients seen in the network. This may include, for example, regional or national resources. However, services used rarely and unpredictably are unlikely to join, as there would be little benefit. One option would be to have an associate membership. This would include the network retaining details about the distant service and, in return, giving the distant provider a formal way of linking to the local network when required.

As I discuss in my blog posts on rehabilitation networks, other people have an interest in the network and how it runs, including:

  1. Commissioners and others who pay for service
  2. Patients and their families, as the people who experience the care provided
  3. The public, as potential users
  4. Other services that refer patients and share care with the network.

Ownership and collaboration

No one owns the patient. Everyone should strive to be person-centred, making the patient pre-eminent.

However, the alternative meaning of ownership is to be responsible for, a phrase which encompasses at least two components. Responsibility may mean paying for something. It also means being the person or organisation with decision-making power and the associated legal position of being responsible for mistakes.

This proposal does not alter the present situation in terms of the actions of individual professionals. However, the network is responsible for ensuring the person’s care is consistent and carried forward across boundaries. This generally requires explicit, mutually negotiated protocols describing shared responsibilities across borders. They must cover sharing clinical processes, resources, and information.

Patients and families are most concerned about clinical collaboration, which depends on sharing information fully and immediately so that each professional can trust other professionals from any part of the network.

Conclusion:

a collaborative complex adaptive network

The issues raised by the team at Mushold apply across all healthcare and countries. Only a tiny minority of people attending healthcare have a straightforward illness that can be cured with no residual loss. Most people have chronic diseases, and most need ongoing healthcare activity. Typically, many professionals see a patient each year. Healthcare systems are designed around short-term acute episodes with no sequelae, not patients who have long-term involvement. Redesigning healthcare systems to respond to patients with chronic illness would be impossible; moreover, it would be insufficient without redesigning social and community care because hospital-based healthcare and social and community-based care are intrinsically intertwined and mutually dependent. Thus, hospital-based healthcare, community-based healthcare, and all social care, including nursing home care, must evolve into a single network of mutually supportive and collaborative systems with agreed procedures for transferring responsibility for and information about patients and for sharing financial aspects of service provision.

Quick links

complexity and innovation
Collaborative network design
Shared cardiac rehabilitation
A rehabilitation network study
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