Patient Advisor challenges & answers
Patient partners, advisors and advocates are often asked questions revealing the questioner’s prejudices, or which are intended to devalue their efforts. futurepatientblog curated the below list of answers to common questions posed by healthcare providers and stakeholders:
‘So, who do you or these patients represent’? This is a blog on the myth of the ‘lay representative’ and why we should banish the word forever.
‘All patients are individual, and their needs personal’. This is another subtle challenge to the ability of any person with a health condition to be at the macro-policy level. However, if patient partners know broadly what matters, then they can use personal insight coupled with a wider understanding of what matters to all, to catalyse conversations. This may help: https://futurepatientblog.com/2015/05/14/the-patients-dozen-what-matters-to-patients-and-carers/
‘What difference do patient partners make’? This is a blog that argues for a different sort of framework to assess the impact of patient partners – it is focused on patient partnerships in improvement work, but could be useful more widely and act as an evaluation framework: https://futurepatientblog.com/2015/03/22/seven-things-that-patients-bring-the-benefits-of-patients-as-partners-for-change/
‘We are all patients’. This is not a question, but a challenge. This is the most trotted out line by health professionals who, by saying it, are implicitly undermining the need for any patient partners at the table. We are all patients? Well, yes…. And no. https://futurepatientblog.com/2014/11/28/we-are-all-patients-yes-and-no/
‘What does a Patient Director do?’ This is a more recent question of course. And I am now beginning to be able to address it. Here’s a blog that tries: https://futurepatientblog.com/2017/06/09/happy-birthday-me-musings-of-a-two-year-old-patient-director/
‘Why do we need to change how we engage with patients?’ The failure of traditional engagement is the underlying rationale for much of what I do and is informed by many years of seeing that the current approach ain’t working.
Why do we need patient partners now? Here are some blogs that discuss why patient partners are needed and why only by creating true patient partnerships can often intractable solutions be found:
This one is about why STPs (sustainable transformation plans) require it:
This one is about the overall culture of fear. And how patients can help
Here’s one for all my fellow patient leaders who are tired of answering questions like these and in acknowledgement of the emotional labour. Thank you:
If you borrow from these ideas, it would be nice if you can acknowledge where they came from. Thank you and good luck.