Patients have real lived experience of their disease and medical care – so does that make them experts in their field?
Here are some different perspectives on this question, and whether patients are undervalued for their expertise.
- Seeing patients as experts in their own field
According to an article published in the BMJ, patients are experts – with the basis for this being that “the interests of patients and health professionals are intertwined”.
The author, Ian Kennedy, says that in the past, the “best interests” of the patient was something decided by their doctor. After all, patients didn’t have clinical knowledge, so how could they be expected to decide what was best for them?
These days though, consumers are savvier and this includes consumers of healthcare. People are more educated, and far more exposed to information than ever before.
But it’s also more than that. Doctors might be experts in clinical matters, but the patient is the expert in their lived experience, says Kennedy. The patient knows how it feels to have possibly their whole life impacted by their disease and medical care, whereas the doctor usually does not.
This means that both parties can come together to pool their knowledge and shift from a position of “doctor knows best” to one of an interactive partnership.
Some might say it’s too big a burden for patients to know what’s best for them, especially for those that are disadvantaged. Kennedy disagrees with that. He says that some people might need more explanations and more time to grasp information, but as humans, they have a right to engage in their own care.
Kennedy says that “good care must involve patients and carers as well as professionals”. However, he says, professionals often tend to exclude patients – not deliberately, but because they don’t know how to involve them. He believes that health professionals should not be criticised for this but helped to overcome the barriers to seeing patients as interactive partners.
- The risks of a “patients as experts” approach
Frank Gavin, Chair of the Citizen Engagement Council in Canada, offers a slightly different perspective as he sees certain risks in referring to patients as experts.
Gavin agrees that while patients may not have the objective expertise of medical professionals, they do offer the lived experience of their illness and the effects of treatments that professionals may lack. But, he says, it can be difficult to define what patients are experts about.
This is because “expertise” is usually quite narrowly defined and involves demonstrated knowledge and skills in a specialised area which have been rigorously assessed. Gavin sees the defining of patients as experts as somewhat imprecise.
Part of his reasoning is that patients often have different levels of knowledge about their condition. For example, some may have learnt all they can about symptoms and therapies, while others have educated themselves at the minimum required.
Another issue is that patients, lacking objective expertise, may misinterpret medical reports, and this can sometimes have serious consequences. In the age of online “cures” not backed by evidence, it’s easy to see how this could be a real risk.
However, Gavin does discuss how patients with rare diseases often do become experts and may even need to educate their doctor about their condition.
Lastly, Gavin feels that calling patients experts could obscure the “deep experiential knowledge” that they so often possess. Many patients, he says, are keen to share this knowledge in order to improve their own health or the lives of others. He says they know, for example, how a treatment affects their lives, such as how it impacts their sleep or ability to do daily activities because that is what matters to them. In that sense, he says, “their knowledge is no less valuable” than that of medical experts.
- Patient-centred funding and decision-making
In a presentation to Rare Cancers Australia, Ann Single from the Patient Voice Initiative says that we often talk about transforming lives, without knowing those lives very well.
Ann discusses how to bring patient perspectives into funding decisions about health treatments and clinical trialsresearch studies performed to test new treatments, tests or procedures and evaluate their effectiveness on various diseases. This can happen through consumer representation on drug assessment committees, consumer hearings and stakeholder meetings, and as part of targeted approaches such as collaboration or engagement with patient groups.
Ann says that as well as assessing health technologies and treatments in terms of clinical effectiveness, safety, costs and ethics, we need to factor in the implications for the patient and their relatives or caregivers. In other words, they should be assessed not in a solely neutral way, but also incorporating the wider human dimension.
This can be done by bringing in patient knowledge and perspectives, and investing in research into patient needs, preferences and experiences. We need to engage patients to be agents rather than just conduits, Ann says.
However, Ann also adds that involvement in healthcare can be burdensome for some patients, and in that sense, it is not necessarily right for everyone.
While there are many views around the roles that patients can play in the healthcare system, there is no denying the benefits that come with partnering with patients and their carers. Discussion can at times become complex in the detail of definitions and classifications, and while there is a time and place for this, we must remember to not lose sight of the importance of putting patients at the centre of decision-making. Because everyone has the right to have a voice and choice in the care they receive.