Share4Rare toolkit for patient advocacy

Advocacy does come with some risks, and it’s important to become aware of these and map them. Leadership, collaboration and communication are essential to act accordingly and minimize damage, because even well-planned advocacy can be interpreted differently. There are several strategies that you can use to be prepared for any problems you encounter. As an example, you can fill in a Risk Analysis.

Reference: https://safetyculture.com/topics/risk-assessment/

Advocacy can be risky

As with anything, there are some risks involved in advocacy. Identifying them and being prepared for dealing with them will be extremely useful.

Your work as a patient advocate may bring you up against powerful players who prefer the status quo. Upsetting the balance that they have created has the potential to lead to a strong reaction which could put barriers in your way.

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One of the largest risks is involvement in industry and political associations, public actions and events. This may result in damage in reputation and finance, or to relationships with stakeholders, partners or the government.

Some general rules of thumb to minimize risk:

• Work in partnerships to spread responsibility and share potential risk
• Make judgements about what risk is acceptable, or should be avoided
• Plan your initiative to understand the impact and map consequences
• Gather reliable evidence that is backed by science and statistics

Avoiding risks

A thoroughly planned advocacy approach should help you avoid confrontation in the first place. If you have designed your goals clearly, and are impartial and transparent about your funding, you will stand up to scrutiny from less friendly voices.

Internally, some examples of where risks can come from are:

• Loss of funding
• Loss of staff
• Funding allocated wrongly
• Misspent funds
• Legal confrontations
• Technology risks

Ensure that during your planning stage, you have back-up scenarios in place for each outcome. Don’t design your budget as if you have the funds in the bag - always leave some room for a sudden loss of funds.

Diversify your staff. Do thorough due diligence if you are going to accept funds (who are they coming from and why?) and if you are allocating funds (why should they get this money, what will they do with it, who are they connected to?).

Investigate the legal requirements of the country you are advocating in to ensure that you are fully covered for even minor risks such as fire, insurance, permits, tax papers etc. A well-organised admin system will help you quickly resolve such conflicts.

Ensure that the computer equipment you use is functioning and has a good anti-virus system. Valuable and sensitive data should be copied and stored on a secure cloud system as well as on a physical drive to minimise disruption if your software crashes. Always ask yourself “How badly do I need this data?” and protect it accordingly. Should the worst happen, you can fall back on your copied files to get back up and running as quickly as possible.

To prepare your budgeting for your advocacy, use the Build a Budget template.

Planning for risk

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Be prepared for things to sometimes go wrong. Some guidelines for anticipating risk are:

• Keeping an eye on the environment you operate in and the people you deal with.
• Tracking political news for the politicians your advocacy relies on/collaborates with.
• Have a press strategy and protocol ready even if you choose not to deal with the media for exposure - when events happen in your advocacy field that are beyond your control, it might be you they want to talk to.
• Advocacy requires a little risk to take it further - decide how much risk you have an appetite for, and where your red line is.
• If you hit a serious barrier - threats, government bodies refusing to cooperate - carry out a risk assessment and decide how to continue.

Dealing with risks

Accept that no matter how well your advocacy is run, some risk comes with the territory.

There will be push-back from parties who don't want to work with you, don't want the issue you are advocating for raised or feel threatened that they'll lose funds if you gain them. However, there may also be more serious issues to address such as conflicts of interest, malpractice or misappropriation of funds.

How can these serious problems be addressed? The best approach is to collaborate with your team members (if you have them) or other trusted advocates who do not have any stake in either what you are advocating or the adverse scenario that you have uncovered.

When you have an approach in place, it is best to resolve conflict at a lower level instead of escalating. For example, talk directly to the opposing party to resolve conflict, and convene a meeting where both your sides are equally represented.

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Taking the issue directly to the media could backfire badly and should only be an extreme last resort. Even when responding to media exposure which a hostile party has initiated, remaining calm and reasoned in the face of their accusations will reduce the risk to your reputation.

The quicker and more low-key the solution, the more likely it is that you’ll keep even a hostile element in check.

Needless to say, serious issues (fraud, patient abuse, miss-selling of drugs) should be taken to a higher authority.