The Patient Voice: Part 2

We’ve heard about how to address the issue of the patient voice (here), and about the benefits of asserting it with openness and transparency, so this is a good time to take a look at what is being done about it already.


The Tuke Institute is one of many organisations working hard to promote the importance of, and need for, patient-centred health-services. With an intensive project underway to produce a set of new ‘Gold Standards’ for HIV-services, among other projects, it’s fair to say that the Tuke Institute’s model is deeper than most. Here at the Tuke, we recognise that what’s currently being done to improve services isn’t enough, and without a collective, continuous effort, starting from the very bottom, barely anything will change. Simon Stevens is coming from the USA to take over the Chief Executive’s for the NHS, our current public health-service system, and he’ll hopefully bring with him some more constructive American values that can fight the complacency that swamps these issues. It will take a motivated and experienced leader, excellent organisation, and a willing team to make it progress.


The Picker Institute has been a leader in promoting patient-centered services, defining seven primary principles for patient-centeredness, including the need for respecting patients’ values and preferences, emotional support and the involvement of family and friends. They embody the shared conviction that patients’ views and experiences are integral to efforts to improve health-services. This is crucial but not enough.


Other think-tanks such as the King’s Fund focus around the importance of clinician-patient partnerships and believe that the patient should be seen as an active participant in their treatment. It’s also crucial, but not enough. Then there are organisations such as Patients Like Me who are key advocators of values like openness and transparency, believing the patients views and needs always matter and come first. Crucially, it links up patient-communities with scientific research to create tools that can help make a difference to the creation of health-effective services and medical technologies. Tools are what will make the change, informed by concepts around patient-centredness, and driving re-design in the delivery of health-services. The Tuke Institute has recently partnered with Patients Like Me to research the development of a comprehensive and patient-centred assessment of health-status, which can be used for identifying individuals’ health-needs, empowering patients’ voices, measuring services’ effectiveness, and reviewing where things need to change in services.
The NHS has recently proposed a Trip-Advisor type platform where patients can review the effectiveness of their health services and speak out about what needs to be changed, what could be done differently, and what is necessary and unnecessary. It’s a shadow of the one proposed by the Tuke Institute, but it’s a first step.


All these efforts into improving patients’ lives centre around the patient and not the service-provider. This is important in order to create a relationship between patients and their health-service providers that benefits the patient first. Promoting the patient-voice and putting a patient-centred model into practice are intended to move towards a common goal: to achieve better health-outcomes. Empowering patients’ voices is essential to provide leverage for organisational-level change.


Each individual patient is the only one who knows what their life is like and how illness affects them. The Patient Voice is essential to delivering health-services that are relevant and address their health-needs, not just their disease-needs. For organisational-level change, patients need to bring their voices together to make systemic change in the quality and effectiveness of our services. A good example of this is the UK Community Advisory Board which is an HIV-organisation providing a network for community HIV treatment advocates across the UK.


Each organisation mentioned above is part of the collective effort in addressing the need for patient-centred services. What’s missing in most are an overall, evidence-based framework for creating change, and the tools to make that change possible, starting from the patient up.


The tools to prioritise the patient voice are gradually being developed through the Tuke’s work. Among several projects, we are developing tools to review the health-effectiveness of services according to each individual person’s needs and experience, not just a sanitised, “Trip Advisor”-type review that is unlikely to be meaningful or effective — not least because the British libel laws need to change. We’re also creating a radically new template for clinical practice-standards in our demonstration ‘Gold Standards’ project, which focuses on patient-centred service and health-creation, not disease-reduction, for people with HIV. Using just these two tools, patients will be able to say what they need that’s relevant to their own lives, and also voice their reasonable expectations about what a so-called “health”-service should deliver.
Change has to occur at every level of health-services but the NHS has tried top-down approaches and they don’t work: there are too many vested interests in the way of meeting patients’ needs. So, here at the Tuke Institute, we’re starting at the bottom instead of the top, with the patients’ experience and voice, translating those into change by developing tools to make that voice heard in co-designing and co-delivering effective health-services. Ours is a unique approach led by personal experience with chronic conditions and empowered by the knowledge of our scientists and advisors. Starting at the bottom, bringing the patient’s voice every step of the way, is the only way to create real organisational change.

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