Patients have become key players in the care pathway and, as such, need to be able to understand the options available to them. There also need to be mechanisms to ensure that care is consistent. Moreover, any variation not resulting directly from patient preferences must be eliminated and outcomes must become more predictable. In the ParkinsonNet case study , we see how pathways can be written in partnership with the patient and, critically, in a form that can be used by the patient themselves.
However, while pathways need to provide patients with choice and discretion about important decisions, an individual’s adherence to them and their reasons for non-adherence need to be captured and analyzed. This process can be effectively managed through automation built into the IT systems, workflow process maps and by better defining the roles and responsibilities of clinical and support staff.
The patient record
For patients to become more involved in their care options, they first need to take ownership of their records and care plans. And, as approaches become more integrated, patients will also need to be able to grant varying degrees of access to their records to health and other professionals. This is particularly important for complex chronic conditions where the patient or their caregiver may take on some (or all) of the role of care coordination. But while the technology that allows information sharing in this way already exists, getting it accepted by professionals remains a challenge in many markets, and there are technical and information governance questions that will need to be managed.
Health literacy, decision aids and coaching
Many providers are finding that getting patients involved in shared decision-making requires patients to have developed health literacy and the support of decision aids and coaching (either face-to-face or electronically). Already there is ample evidence to show that greater health literacy helps patients to make better decisions and – in the case of chronic disease – manage their conditions more effectively. In fact, studies have found that increased health literacy has a significant impact on reducing unplanned hospital admissions.
At the same time, the growing interest in reducing over-treatment has led to the development of more information aimed at helping patients make better choices, particularly about tests and procedures where there is strong evidence of over-use and limited benefit. In the US, a number of specialist medical societies are actively producing web guidance tools aimed at helping inform patients about disease areas and treatment options and, in some cases, these are being used as a routine part of care between doctors and patients. Adjuvantonline is a great example of how web guidance is being used in oncology centers around the world.
Continuity and access
While most patients seem to want rapid access to high-quality professionals, a significant proportion, particularly those with chronic diseases, also want to see the professionals that know their particular circumstances and understand their condition. And while it is possible to create some form of electronic continuity, this can never be a complete substitute for relationship based care. This means that either patient expectations will need to be renegotiated, or providers will need to undertake substantial reorganization of the work of clinicians in primary care and specialists dealing with chronic diseases.
As noted in the ParkinsonNet case study, patients are increasingly using social networks to connect with their peers in other markets, communities and countries. Sometimes, this has been combined with specialist portals that allow the interchange of information between patients and their providers. For payers and providers, the challenge is in working out how to engage with these networks, particularly in situations where the service is provided by a third party and therefore outside of the payers’ and providers’ control.
Technology to support self-management
As technology advances, we are seeing a range of new technologies emerging that are aimed specifically at helping patients manage their own care more effectively and efficiently. These include devices that support and facilitate physiological measurement, health status tracking, and access to advice. Increasingly, these solutions are being incorporated into smartphones or as add-on devices to existing equipment already owned by patients. As is often the case, the introduction of a new technology can often be far less challenging than the redesign of work processes and job roles that are required to support it.
A note of caution
It should be noted that not all patients (or their families and other potential caregivers) want to take responsibility for the management of their own care. Particularly with the elderly and those that are less ‘health literate’, patients may decide to let a clinician make some of these choices for them.
We also know that there are different segments of the population that have very different attitudes to self-care and self-management. Indeed, a sizeable proportion of the population may belong to segments that are not very engaged with their own health, are fatalistic or in denial. These vary significantly between different countries and cultures, as does willingness to challenge professional views. Those providers and payers that do not properly understand this, may find that their approaches fail to get traction and, as a result, resources will be wasted.
In the UK, the Whole System Demonstrator program found that 30 percent of patients did not wish to participate, in some cases because it was felt that the technology would act as a constant reminder of their illness.
In fact, there is still some debate on whether the frequent measurement of physiology actually helps people manage their health, with some arguing that we run the risk of ‘medicalizing’ normal variation and turning risks into diseases, creating unnecessary anxiety. Great care and multiple experiments will be required to make sure that some of these mistakes are avoided.
Back to top
Key take away points for Patients
It is perhaps odd that it has taken so long for the patient to be recognized as being central to ideas about how healthcare needs to change. Putting the patient at the center is a slogan that is regularly heard but has often just been rhetoric. This is not only misguided but it means that a significant opportunity has often been lost.
Shared decision-making, co-designed services, patient self-management and the use of technology to put patients in control of their conditions could be a very significant trend. In the US this has been further reinforced by a provision in the Affordable Care Act which calls for the increased use of shared decision-making.
Ultimately, those providers and payers that are able to find new ways to work with their patients to adopt these new approaches will enjoy a significant advantage, strengthen their ability to deliver better care (often with fewer resources) and improve their ethical standing.
However, the journey can often be difficult and will require a change in behavior amongst providers, greater education of patients, more integrated technology and a range of new organizational competencies.
This relationship between patient, provider and payer will be key. It requires commitment to partnership and trust. There is also a need to invest in communications, relationships and awareness, ensuring everyone understands the issues and has the opportunity to contribute.
Experiments, adaptation and sometimes – failure
One of the most thought-provoking contributions to our conference came from Tim Harford, Senior Columnist at the Financial Times. He argued that today’s highly complex challenges do not lend themselves to top down leadership; the world has become far too unpredictable and complex. Instead, we must adapt – improvise, work from the bottom up, and take small steps rather than great leaps forward.
A number of the strategies listed here are emerging and all of them depend on the local context. They need to be adapted and modified to match local circumstances and, in many cases, require experimentation and the testing of new ideas. This is a worrying thought, particularly in healthcare and especially in those systems that have a high level of political involvement, as it means that there will be quite a high level of risk and some failures. But there is no real alternative.
An important role for leaders is to create the environment in which this spirit of innovation and experiment can thrive.