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Should Patient Volunteers Get Paid?

There’s been a lot of talk on social media lately about a three-year-old report. Should money come into volunteering? A tool for deciding whether to pay patient-engagement participants was released by the Change Foundation (Ontario, Canada) in March 2015.

Although I’m not sure why it took three years to get this report back on people’s radar — it’s creating a lot of buzz and debate amongst healthcare professionals, administrators and patient volunteers.

I’ll let you read the report for yourself. What’s interesting is the tool lays out a number of questions to help determine whether or not a volunteer should receive financial compensation. Some of the questions look at the time commitment (preparation and meetings), the duration of the commitment (one time versus ongoing), and the degree of impact volunteering will have on the patient (monetary or emotional).

As an active patient volunteer and someone who works in patient advocacy, I have many thoughts on this matter. And apparently so do a lot of other patient volunteers.

A common beef volunteers have is being asked to speak at a conference, where all the participants are not only being paid to attend but have also paid a conference fee. The patient volunteer is invited to give a patient perspective or voice, often with little or no compensation (and many feeling as though they are the token voice…but I digress).

To speak, the patient either has to take personal vacation days from work or, if they are self-employed, give up valuable billable hours. Very rarely are these conferences held a short drive from the patient’s home. So now you add preparation time to create the presentation, travel time and time attending the conference. A one hour presentation is often a 15+ hour time commitment (or more depending on travel involved).

Social media posts on this topic include stories about being compensated with a $5 Tim Horton’s (coffee) gift certificate — which many felt was a bigger insult than receiving nothing. Another patient wrote about having the word NOTHING under her name on her ID badge, on the line where the organization’s name would go. She commented on how the whole experience made her feel the wording was justified.

When looking at conference speaking, my concern is the sheer lack of appreciation for time involved for the patient to prepare and attend. And we are talking about conferences with sponsorship and paid attendance. I’m sure other speakers are being paid (especially the keynotes). Throwing in a free hotel room and breakfast isn’t enough.

Paying the patient speaker a token fee, should be part of the conference’s budget planning. Trust me, no patient is getting rich speaking at conferences. Rather, it’s about compensating and valuing the time of the volunteer, acknowledging the voice and insights they bring.

Another area of debate is patient volunteer participation on healthcare committees. This focuses on committees where there is a minimum one-year commitment and regularly scheduled meetings (often monthly).

Once again, the patient volunteer is often the only person on the committee who is not being paid to attend. For the other committee members, this is part of their job, meaning they have time set aside for meeting preparation, reading email correspondence, traveling to the meeting, attending the meeting and researching any areas for discussion. Once again, the standard two hour meeting is often an eight+ hour time commitment.

A patient volunteer is expected to commit the same amount of time — once again at the cost of taking time away from their work or family. The sheer fact they volunteered to join the committee, is seen as justification for not compensating them. Many recommend $1,200–1,500 for a one-year commitment to sit on a committee that meets monthly. If you do the math on eight hours/per meeting, it works out to $12.50/hour.

Okay, let’s talk about the elephant in the room. For those of you who made it this far, I’m sure some of you are rolling your eyes thinking — but you volunteered!! Get over it. You freely gave of your time. Why do you think you deserve compensation?

Agreed. We have given of our time. I have chosen to sit on the monthly committee meetings. But I have also chosen NOT to volunteer on other committees or projects where I know I can make a valuable contribution. Why? Because I’m self-employed and can only afford to donate so much of my time.

Right now there is a big move in healthcare to engage patients and have more patient volunteers at the table. A lot of times these volunteers are predominately retirees because they have the time to donate.

While this is great, it also means a number of voices are NOT being heard or represented. Women, parents with young children, parents of kids with special needs, low income patients, First Nations, patients with mental health needs. The list goes on.

This isn’t about compensating every single volunteer. Rather, it’s about looking at the larger volunteer commitments like conference speaking or committee participation. These are areas where the cost could be budgeted, just like the free coffee and muffins are budgeted.

I want to end by stressing no one is looking to get rich or make a career being a patient volunteer. We volunteer because we want to make the healthcare system better for ourselves and others. We have something to say and want our voice to be heard. We do this out of love (and sometimes frustration), but never about the money.

Patient compensation is about respecting and valuing the time away from family and work needed for larger patient volunteer experiences. And through compensation, hopefully we will go from being a token voice at the table to an equal voice.

If you want to hear more of my thoughts on patient advocacy visit learnpatientadvocacy.com.

Also published here.

Writer, communications professional, speaker and patient advocate. Visit www.howtocommunications.com for free communications tools to help share your stories.

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