There is a growing consensus that patients need to be more included in the medical field, reports PCMA Convene.

Over the last ten years increasing numbers of organisations have moved to improve patient involvement in discussions about medicine. In the past, medical conferences have been aimed at doctors, researchers, healthcare providers, and others. The roles of patients, patient representatives, and caregivers have often been overlooked. Increasingly, however, organisers are recognising the value that patients can add to events and are beginning to include them at medical conferences, usually as speakers. Several organisations now emphasise the importance of including patients at their events. One of these, Medicine X, was founded on the belief that healthcare improves most quickly when everybody contributes to the discussion.

Individuals are also working to improve patient involvement. Lucien Engelen, director of the REshape Centre for Health Innovation, attended a conference in Dubai where there wasn’t a single patient present. Following this, Engelen decided to only speak at events that patients attended, and wrote a draft of the “Patients Included” charter, which provides guidelines on how to encourage patient involvement. Similar stories are common. For some, like Engelen and Medicine X, the movement towards patient involvement was fast, but for other organisations, such as the European Lung Foundation (ELF), the process has been gradual. Pippa Powell, director of ELF, says that making sure organisations that represent patients attend the annual conferences is important, because they are then able to return to their communities and share information about new discoveries and upcoming research that patients might not otherwise hear about.

Other leading figures in the medical field have also spoken out about the benefits patient perspectives can bring to discussions. Sudip Parikh, senior vice president and managing director of the non-profit Drug Information Association, Americas, described a board member who fought for patient inclusion at meetings. Some others objected to bringing patients on board because the topics were thought to be too scientific or technical for patients to easily contribute to. However, inviting patients to participate turned out to be very helpful for the organisation. One of the areas patient opinions were found to be important in was deciding what the objectives of new treatments should be. While most companies and researchers measure treatment success by how well it extends someone’s lifespan, patients tend to emphasise an improved quality of life as an important goal in itself. These discussions can have significant practical results. For example, a drug for Duchenne muscular dystrophy was not found to significantly extend a person’s lifespan, and it was uncertain whether it would be approved. However, patient advocates convincingly argued that ability to hold cutlery or smile was important in itself, and the drug was approved.

Helping to put patients and people working in the medical field in contact with each other is also important because it shows people who they are working to help. A researcher working on pre-clinical genetic or molecular treatments usually spends most of their time in a lab, causing them to be disconnected to the ultimate end point of their work – a treatment. Researchers who meet patients have said that it reminded them who they were trying to help, and encouraged them to work at a faster pace.

Testimonials like this highlight the role that patients can play in medical organisations. As the recipients of the treatment, patients are the people best placed to say what the aims of treatments should be and what researchers should focus on. Patient voices can also bring a more human aspect to the medical industry, in which workers can often feel removed from the people that they are trying to help.

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