Patients first! 

#NothingAboutUsWithoutUs

 

It might seem obvious that patient needs should have highest priority in healthcare. But we believe that this isn’t always the case.

 

Healthcare has become a huge and complex industry with many different stakeholders, each with their own aims. These objectives are not necessarily identical with those needing care and treatment from the system.

 

The market system creates incentives and constraints, which may not coincide with the greatest benefit of patients.

 

Regulation and supervision exist to protect patients from possible damage and ensure best care, but these cannot fully resolve the fundamentally divergent interests between different stakeholders.

 

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In personal care treatments are usually chosen and administered on the decision of healthcare professionals. We believe that particularly in chronic disorders, such as rheumatic and musculoskeletal diseases, patients living 24/7 for many years with their conditions have acquired much knowledge about disease management, and the effects of treatments and care.

 

This knowledge doesn’t find its way into care plans and is not always solicited. If patient knowledge were to be used in scientific research, it would help ensure that the right questions are being asked, and research efforts would be relevant to patients’ needs.

 

This is the starting point for RheumaCura: to include and integrate patient wisdom into research and the development of better healthcare.

Patient-centred research

 

Patients are a source of information and understanding that are often overlooked in medicine. The concept of engaging patients in healthcare is neither new nor complex, however it has not yet been adopted widely in Switzerland.

 

Patient-centred research is part of an integrated concept embracing collaborative efforts between scientists with different specialist skills, clinicians and other health care workers, patients and their families and close others.

 

Such collaboration should make research more relevant to patients’ needs and thus ultimately lead to better care, treatments and prevention.

 

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“Nothing About Us Without Us”

Patient-centred research emphasises that research being carried out ‘with’ or ‘by’ members of the public and patients, rather than ‘to’, ‘about’ or ‘for’ them. It covers not only the involvement but also explicitly recognises that medical research should always be centred around the patient, and not driven by profit motives or professional ambitions.

 

The continuum of patient engagement

Patient engagement begins with structures to enable feedbacks and complaints about services. They may be asked to participate in surveys or focus groups. Experience has shown that resulting recommendations seldom lead to change.

 

The most effective level of engagement is when patients can actively contribute with their knowledge and experience through co-construction in research projects, and patients are involved in the whole research cycle from ensuring that the right questions are asked to the introduction of new treatments and their evaluation.

 

RheumaCura aims to involve patients at the highest levels of engagement.

 

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Understanding and Contributing

 

Patients want to be listened to and bring their needs and ideas into healthcare to improve it. We believe that they have much to contribute.

 

We understand our work as a form of citizens’ science because research supported by RheumaCura will be conducted with patient participation, sometimes called "user involvement".

 

The two dimensions of the relationship between citizens and science:

 

  • science should be responsive to citizens' concerns and needs;
  • citizens themselves can produce reliable scientific knowledge.

 

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Patient-centred research addresses both these aspects. Here are some of the questions in a research project that patients’ knowledge and experience can help to answer:

 

  • Are the right questions being asked and the factors of concern for patients really being addressed in the research?
     

  • What factors must be considered when designing and preparing a research project, so that it is relevant to patients?
     

  • Who are the most suitable patient participants to recruit for a project, and where can they be found?
     

  • How to collect, interpret and analyse the data as “real-world evidence” meaning the knowledge that is relevant to those affected by disease?
     

  • How to ensure that new knowledge is made known and safely integrated into the health care system and clinical practice to help patients?
     

  • How to monitor and evaluate the “real-world” results of the research and learn for future activities?

 

These questions show that patients can be involved along the whole research chain from developing the research questions to supporting efforts to get the results known and available to those needing them.

 

Equally patients want to learn, both from other patients and from healthcare professionals. This can help them to manage their own conditions, and contribute to improving health care.

 

It is by sharing knowledge, understanding each other, and contributing to collaboration, that healthcare improvements, innovation and new ideas are created.