Friday, 20 July 2018

Being a Patient Advisor: One of the Drawbacks

It has been an illuminating time recently on social media, hearing patients and caregivers express feelings of frustration, and of being used and vulnerable.

It's likely they too have been described as "Expert Patients" or "Professional Patients" to their faces, and in referring to people like them. I find the implications of both expressions offensive in their suggestion that I am taking a space where an 'unheard voice' should be sitting.

Just this week in a tweet chat a participant said a _ xy _ _ initiative will have failed if we simply give greater voice to those who already have loud voices, and I doubt he was referring to researchers, professionals, or funders

I did not choose to become a patient; none of us do. I developed a chronic disease 30 years ago that continues to this day and has seriously damaged my bones and joints. I get involved with issues and causes and try to contribute positively to finding solutions or answers that will effect change because I know many system weaknesses and pressure points first hand.

Now that I have developed more knowledge about the health care system I can deal with it better on my own behalf and can also be involved in efforts to improve the situation for other patients and caregivers.

But as Dawn Richards said in her BMJ patient blog this year, the patient is also a person.

In my deepest self I am not a patient, but in any interaction with the health system, that's my assigned persona. Being the 'Expert Patient' that I am considered to be does not mean that I have stopped having my own inconvenient personal encounters with health care.

a) Being knowledgeable does not mean I don't need medical help.
b) Expending my energy as a volunteer does not mean I am healthy.
c) Spending hours every week reading and learning enough to be able to follow and contribute to high-level conversations about system issues should not be something used against me.
d) It is not the job of patient volunteers to make the volunteer pool diverse and inclusive.
e) Not everyone who would like to volunteer is able to. 

It's ironic that those who are least able are often the only volunteers around the table, giving their own time to benefit others.

Another issue is patient engagement as highlighted recently by Isabel Jordan @seastarbattitta. Her story of being profoundly disregarded after working on a project as a team member, and then being ignored can be taken as a lesson in how NOT TO engage patients.

When I began to be involved as a patient partner, or as a conference invitee I was excited and happy just to be there. After years of experience my sense of tokenistic involvement is a lot sharper. One of my older posts is about the Authentic Patient Voice and how much I wonder what the main agenda items at meetings would be if patients choose them without being 'guided' by well-meaning professionals.

It is disturbing to see patients characterized as being responsible for overcrowded emergency departments, as seekers of pain treatment, as pushing doctors into prescribing unneeded antibiotics and tests, and as non-compliant with medications. It only makes sense to involve all members of the team in creating solutions for health system problems, and that team includes patients, who are actually paying for the whole health edifice as taxpayers and as users of non-covered services.

When volunteering as a patient advisor I don't like being called an 'expert patient' or 'professional patient'. Gaining experience with the health care system was never my goal. The work involved in being a patient is a real burden.

If #patientengagement specialists look at me and wish I were an unheard voice, rather than an older white woman who is retired, why don't they work harder at inclusion? They could reach out to communities that include the people they would like to see, and invite them to participate, or at least ask them about methods of participation that would make them comfortable with the process.

If researchers or organizations feel their initiatives will have failed if they simply give greater voice to those who already have loud voices, what are they going to do about it? 

Blaming the people who are helping you now will not attract people with different viewpoints or backgrounds. As a person who spent 20 years recruiting I know it takes time, energy, and innovative strategies to include people you seldom see represented around the table.

Twitter persons who informed this blog post included: @to_dpr @solidfooting, @PFEAMorin, @amaybee, @couragesings, @seastarbattita. I am @anetto


  1. Annette, I have found that most professionals that have been at conference I have attended have treated me very well. I find it less so in some most traditional patient forums. I believe in fact that most researchers are happy to see patients, it seems less so in doctors office where professionals sometimes act like they are doing me a favor. Go figure?

  2. What a brilliant post Annette, I also think that your point about subjects covered should sometimes be chosen by the expert patients and in no world should you ever be made to feel like you don't belong there. Of all the people around the table surely the patient is one of the most important as we're the ones living these diseases, we're the ones the actual experience of them and the knowledge of some of the things we need to improve.