two steps backwards

See when it starts to fall apart
Man, it really falls apart – Tragically Hip

I am watching across Canada as the patient and family engagement movement in hospital settings is taking two steps backwards.  Councils are being disbanded, patient and family staff members (whether they are paid or unpaid) are resigning or being forced out of positions and are being replaced with clinicians.

There is a real fragility that underlies the patient engagement movement.  If patients and families behave themselves, then all is fine.  The minute there is a change in leadership, or something gets hard – like an ethical issue comes up or there is conflict – then BOOM it is over.

It seems as if this movement is so precarious that it can only survive when things are going well.  I define going well as: patients and families mirror their behaviour as close as possible to the behaviour of clinicians and administrators. We must dress like them, talk like them, show up when they tell us to and agree with them. Of course, this erases any hope for diversity and leaves the pool of engaged patients university-educated, articulate and economically well-off, just like the clinicians and administrators themselves.  Patient engagement quickly becomes doomed the moment there’s a sniff of any difference or contention.

There is now a trend throughout the country to replace paid families or patients with health care clinicians in patient engagement roles.  I think this is because:

  • The patient/family engagement movement has become too successful.  We have amassed too much power in the eyes of administrators.  This, ironically, means that engagement has become no longer tokenistic and is finally meaningful.  But to have power you have to take power – and administrators and clinicians simply aren’t willing to give their power away.
  • Paid family members and volunteers are not ‘professionals’ (nor should they be, especially if people are truly looking for diversity) but health care is built on the structure of professionalism.  Having laypeople make decisions in ways that are not tokenistic is just too much for most bureaucrats.
  • The way patients/families are treated at the organizational level mirrors the way they are treated at the point of care.  If there is bad morale and low patient satisfaction at the bedside, then efforts in patient engagement at the organizational level will suffer too (and vice-versa).
  • Many people in senior leader positions do not understand the role of families/patients in organizations.  They might understand the bedside engagement, but the patients in organizations concept is new and poorly understood.
  • Health care culture is also exceedingly slow to change to new ways of doing things.  Patient engagement at the organizational level shakes the status quo. In the Canadian health care system, the status quo does not wish to be shaken.
  • Patients or families in paid positions, on councils or committees do not have a common job description, standard training or defined core competencies. In other words, they are not regulated in any way.  The health care environment is one that demands structure and regulation in order to gain credibility and respect.
  • Patient engagement still butts up against some professions and threatens them (I’m thinking of those clinicians who think it is their job to advocate for patients, not the job of patients and families themselves).

Replacing patient and families with clinicians swings the pendulum back to where we were 15 years ago.  Clinicians are now speaking for us instead of creating environments where we can speak for ourselves.

I’ve laid out the reasons for this problem and will continue to ponder solutions.  I would suggest that patients and families first abandon any tokenistic work right now and search for the rare environments where true engagement is still happening.  Be picky about how you spend your time.

For instance, my colleague Isabel Jordan has found success as a family partner in the area of research.  While some hospitals still have the reputation of being champions in patient and family centred care, meaningful engagement in the hospital world is becoming rare.  If you find a place where you are being treated as a respectful partner, hang onto them tightly.  These scarce places seem to be going the way of the dinosaur.

It is time for patients and families to regroup and rise up again on our own and abandon the shackles of the health care system.  How do we do this?  I think the answer lies outside of the system, not within it.

One thing we can do is to keep telling our stories on our own platforms instead of politely waiting in the wings for conferences, hospitals or universities to extend us invitations to share our experiences.   Use your voice now.  While the system now seems to prefer that professionals take over speaking for us, never let them steal your story.  Your story is the one thing that is yours. Protect it fiercely.  Now is the time for us to take our power back and we will rise up again, one story at a time.   xo.

Edited to add:  I’ve written about both best practice + poor experiences in patient engagement here: here, here, here, here, here, here, here, herehere, here. 

2 thoughts on “two steps backwards

  1. Miles Sibley says:

    Don’t know whether you might be interested in this analysis: http://onlinehealthcommunities.org/executive-summary/ It’s about the UK, so refers to NHS institutions, and it’s also about online engagement rather than face to face.

    But it talks about online health communities creating a potential divergence between traditional patient engagement (facilitated/mediated/controlled by healthcare institutions) and new forms of engagement (networked, autonomous and not reliant on permission or support from healthcare institutions).

    It may be that online is somewhere that healthcare providers can’t own the space and set the terms. So it may be an area where at least some patients and public can shift the ground and shift the power balance.

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