Availability of resources: time, finances and emotional labour

Time

Typical patient partners are constantly trying to juggle many competing demands for their time and energy. Their own health and caring responsibilities should always come first. Many also have paid employment in other fields. This further reduces the amount of time and energy they have to spend on their advocacy work.

Finances

It is increasingly common for health and research organisations to offer activity payments to their patient partners, as this is recognised as good practice. In a truly equitable scenario, patient partners should not be financially disadvantaged by their decision to share their time and talents with these organisations.

Professional organisations which invite patient partners to collaborate should recognise the importance of offering compensation (for their time) and reimbursement (for any expenses incurred), and do the work internally to ensure there is an appropriate budget for these activities. Patient partners may not always wish to claim on this budget, for personal reasons. (For example, they may be receiving support from the government which limits the amount they are allowed to earn elsewhere, or there may be tax implications.) But the offer should be there.

Some examples of practical guidance on payment include:

• The UK National Institute for Health Research, NIHR

  for institutions

  for patient partners

• Institute of Genetics (Canada)
• Australia
• Tools to support patient remuneration when interacting with the pharmaceutical industry – FMV 2022 – PEM Suite

For more on the wider topic of compensation for patient partners, see this paper attached.

Emotional labour

As we discussed earlier this week, it can be very powerful for patient partners to share their own stories. But many of these can be painful to recount, and responsible organisations can identify ways of reducing this burden. For example, patient partners can make videos or other resources to tell their story, which can be shared with different audiences without requiring them to be directly involved every time.

Reflection questions:

Are there any other factors apart from time, financial resources and emotional labour that could impact on your ability to advocate? What are these? How can these be addressed?