Every bad experience is an opportunity for change. And it’s usually a driving factor to do things differently, or make sure they get done differently. With illness, it’s a bit like that: you don’t want your condition to persist, and you hope others don’t go through the same. We’re all humans – clinicians and patients are not alien to each other; it’s guaranteed that at some point in clinicians’ lives they too have experienced some sort of ill-health. Our humanity connects us, but unfortunately other factors sometimes compromise that connection. It shouldn’t be happening between patient and clinician: the clinician provides the treatment but it’s the patients’ health in the balance, so the clinician shouldn’t have the power advantage. We shouldn’t resent “going to the doctor”, there should be a multidisciplinary team on hand to deal with our every need, including those qualified to deal with our most personal issues. There are clinicians that are willing to learn from their patients’ experiences, and take a vital step towards patient-partnership.
The Tuke Institute has researched patient-participation to evaluate the ways in which patients could be more involved in decision-making regarding the treatments and services they receive and how this affects health-outcomes. One problem that appears to crop up again and again is the lack of collaboration in the current models of services. One way to deal with it is to act on what emerges from the patient-voice and establish a health-service design to reach the best possible health-outcomes for patients.
The Radboud Centre are taking a similar approach; embracing the patient and their family as part of the team of health workers. They also believe in empowering the patient first and foremost by enabling patients’ participation. One of their most recent research projects, led by Lise Verhoef, called “Social media to obtain insight into quality of care” did just this. It assessed the quality of health services from the patient’s perspective by looking to social media and rating sites, where patients opened up about their experiences. The Tuke Institute similarly looked into rating sites for health-services, and came up with a design for a scientifically validated Trip Advisor for health-services. The Radboud concluded too that this new source of information, social media, should be used if we are to take a patient-centred approach. They added that it should be used to complement traditional methods.
The King’s Fund take an even more patient-specific approach than this, one that “sees the person in the patient”. This approach is one that looks at the problems patients face and the factors that shape their health-service experience. Ultimately it should enable health service staff to relate to patients and deliver the quality of services they would want for themselves or their families. The project was launched under their ‘Point of Care’ programme which really does push us to think about what the point of our public health-service is. It isn’t just to be rid of an illness or affliction, it’s to stay well too. The Tuke Institute believes in getting well and staying well, and that is only possible if the services are sufficiently effective.
If we are going to move towards patient-centred health-services, patients should have their voices heard in order to share their insight on how services should be designed. After all, patients know their lives with their condition far better than clinicians do, and they know sooner and better what works and does not work. However, patients’ insight can only be shared by patients if there exists a partnership with clinicians. Patients should be empowered to challenge the flaws in the framework, to help treatment become personal. This would help make a health-effective, sustainable health service a reality; one that is equipped to deal with every single need of its patients. Health-services need to make decisions based on their patients’ needs, not the services’, as achieving the most health-effective outcomes should be their number one priority.
Now has come the time for me to say goodbye, as this is my last blog as an intern. Over the past year I have done lots of reading on patient empowerment, the patient voice, and patient participation. Realising just how important it is for patients to play a part in the design of health-services really inspired me to write these blogs. There is nothing more fundamental than patient-participation in improving health-services. As someone who aspires to do some work in medical journalism, and by now I know the field pretty well, I can’t stress enough just how under-represented the patient voice is. When patients are the ones who know their condition, know what works for it and what doesn’t, know that they may require mental and social health services as well as physical health services, why are physicians making all the decisions as to how they are treated? This is why problems happen, again and again. Without patients, health-services will not improve. Writing these blogs has been a motivating experience, thank you for reading!