Operating within the existing hierarchies and contexts

‘What if you spend all your energy busting out of one box, only to find that it was nested within a larger one the whole time?’ – Lucy McKay, CEO, Medics 4 Rare Disease

One of the keys to successful patient partner work is to understand the organisational or institutional context in which you are operating. Which levers are you trying to pull? Whose decisions are you trying to influence? And how does that system relate to the wider financial or political frameworks within which your actions are sitting?

For example, patient advocates may spend a long time trying to make something different happen in their local hospital, and succeed at that location but then discover that the wider region is about to restructure the way it delivers that service anyway. Or patient partners lobby their government to include a policy proposal that would support a particular condition in a new genetic testing initiative, but then national budgets are reallocated and the whole programme is scrapped.

The natural progression here is to remember to keep looking upwards along the chains of command, and recognise where and how you can most effectively have an influence on the system as a whole. And to build alliances with other patient partners who are trying to achieve similar things.

Balancing patient advocacy with organisation needs and goals

Partnering with organisations for healthcare, policy or research projects might be an exciting opportunity, but it may not always be smooth for patient partners. Depending on how the project and patient involvement are structured and the goals and existing systems of the organisation that you are working with, you might encounter constraints and sometimes resistance to the change you are advocating for.

Some of the key challenges include:

• Balancing organisational mission and strategy with your advocacy. The organisation might have pre-set strategic goals that might limit the scope of advocacy. In partnering with the organisation, you would need to consider whether your advocacy aligns with the core mission and values of the organisation and what compromises you are willing to make to balance the organisational mission with your advocacy. The question you have to ask yourself is whether this is worth it and whether it would translate to achieving long term goals.
• Navigating complex bureaucratic systems, organisational culture which might not be used to working with patient partners or facing institutional resistance that can slow down your advocacy efforts.

These are realistic situations that you might face but it should not deter you from working with organisations. Rather, go in with awareness and navigate these constraints by building trust, having clear roles, responsibilities and expectations and crafting realistic strategies. Where possible, find a trusted insider within the organisation who can help you navigate.

Paid staff vs. volunteer patient partners

One challenge to look out for in long-term patient advocacy situations is the fact that some people (patient partners) are essentially doing this as volunteers, while some people (staff) within a health organisation are paid a salary to be there. There is a growing expectation that patient partners will be offered financial recognition for their time and expertise, and a growing literature of guidance about how to achieve this, but the level is very unlikely to match the salary of their collaborators within the organisation. Even in the most integrated ‘co-production’ scenarios, this fundamental difference can become a source of friction.

Passionate volunteers can find themselves becoming disappointed by what their salaried counterparts do (or don’t do). Employees should ‘switch off’ when they are not working – something which may not be possible for people who are living with or caring for someone with a health condition which affects them all the time. There can also be a perception that people working directly for an organisation know more about its activities than their patient partners, who sit alongside but outside of it.

How to remedy this?

• Continual reinforcement of trust, for example by regular team building opportunities between staff and patient partners
• Clear and reciprocal communication between all the parties about ongoing initiatives, and an objective commentary on what they mean for patient partners and the communities they represent
• Clear boundary lines and terms of reference, recognising the strengths and responsibilities of each party (and, if necessary, clear exclusions setting out what it is not appropriate for volunteers to be involved with (e.g., hiring and firing staff))
• Co-development of future strategy, where patient partners’ and salaried colleagues’ inputs are valued equally
• Good support for patient partners to avoid burnout wherever possible (which we will return to in Step 5.4)
• Organisations engaging with patient partners should be aware of the imbalance and seek ways to minimise it where possible (e.g., they should not require their patient partners to sign up for complicated employee registration or expenses payment systems that are designed for staff members), and should ensure that there is and appropriate budget for these activities
• In countries and communities where patient partnership is new, it is important to engage interest holders in developing an equitable framework that is contextualised to your environment and culture. For example, in the Lee Kong Chian School of Medicine in Singapore, the team framed the patient partner compensation as a “gratitude token” after consulting all stakeholders including patient partners, while ensuring the payment structure is aligned to global practices.