{"id":41485,"date":"2018-02-23T16:45:57","date_gmt":"2018-02-23T15:45:57","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=41485"},"modified":"2018-03-15T18:04:38","modified_gmt":"2018-03-15T17:04:38","slug":"anya-de-iongh-are-patients-and-carers-healthcares-untapped-workforce","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2018\/02\/23\/anya-de-iongh-are-patients-and-carers-healthcares-untapped-workforce\/","title":{"rendered":"Anya de Iongh: Are patients and carers healthcare’s untapped workforce?"},"content":{"rendered":"

\"\"On Wednesday 31<\/span>\u00a0January, the dark and cold weather was a contrast to the warmth, passion, and dynamism of the contributions to <\/span>The BMJ\u2019s <\/span><\/i>first Twitter chat of 2018. 800 plus tweets were sent from over 125 people on the topic of patients as partners in the workforce. The chat was stimulated by Tessa Richards\u2019s BMJ opinion piece<\/a>, discussing patient\u2019s leader\u2019s roles in healthcare. <\/span><\/p>\n

Without wanting to impose a label for the varied roles that fall under the term \u201cpatient,\u201d we started by asking people how they described themselves. The responses included volunteers, advocates, champions, collaborators, campaigners, and activists, with many not able to find a single word to do justice to the range of ways they contributed.<\/span><\/p>\n

With all of these roles, the personal experience is the catalyst to get started. Dawn Richards<\/a> noted the importance of having the \u201cability to look beyond our own situation\u201d and Alison Cameron noted<\/a> the skill of knowing \u201cwhen to bring our personal experience and when to leave it at the door.\u201d Alison also mentioned the importance of being \u201cprofessional, while not losing the power of our personal perspective.\u201d<\/span><\/p>\n

To only focus on this patient experience is to lose the wider benefits of partnerships with patients in these roles. Although sadly, the wider skills of patients are often rendered invisible by the system once given a diagnostic label. Nigel sees his<\/a> \u201ccore skill as being able to apply techniques I have adopted in other walks of life\u201d to his work. The crux of this issue was summed up in one tweet by Jennifer Skillen:<\/a>\u00a0\u201c<\/span>Even if patients also have other talents and skills, they are often dismissed. They don\u2019t teach business skills in medical school, but they still assume they know more about running businesses than patients who run their own successful businesses\u201d<\/span><\/p>\n

The conversation then moved onto where these individuals \u201csit\u201d within the \u201csystem\u201d and its constituent organisations as influencers.<\/span><\/p>\n

The core principles that felt so treasured, such as being able to constructively question, challenge, and seek information felt more suited to sitting externally to the \u201csystem.\u201d There was a concern that being internal means individuals end up being institutionalized and unconsciously biased. It enables more of a \u201chelicopter view but does make it harder to identify the key influencers.<\/a>” There was a fear of being \u201cbeholden\u201d to the organisation if internal, but it was acknowledged that it often takes more energy when you find yourself sitting on the outside.<\/span><\/p>\n

There are clear advantages to patients in these roles, but are organisations\u2019 motivation for establishing them well placed? Dawn Smith cautioned<\/a> that some approaches are \u201cwindow dressing\u201d or are \u201cused for an empathy rush.\u201d Neither of these are conducive to meaningful or impactful patient partnerships.<\/span><\/p>\n

What difference does it make in these roles if people are internal or external to the organisations they are trying to influence? It <\/span>is one of many factors patients have to weigh up when deciding to take any opportunities presented to them to be involved. Some of the questions shared during the chat could help people make the right decision about whether to accept, beyond the initial flatterly of being asked: <\/span><\/p>\n