27 Jul Patient Advocacy – when it goes wrong
Here at OVID Health, we are proud to be experts in supporting patients to secure change through patient advocacy. In the third instalment of this short series of blogs, we are sharing some of the insights we have gained working with our clients and running the Patient Partnership Index.
As we have discussed in previous blogs, we know that collaboration between industry, patient organisations and professional bodies can be a powerful tool to deliver change. But building long-term partnerships isn’t always easy, and patient advocacy can be complex. So in this blog, we want to explore some of the ways in which patient advocacy can go wrong, and what the consequences might be when that happens.
There is little point picking on specific instances of activities going wrong. It is generally the case that everyone involved in such case studies acted in good faith and did what they thought was right in the moment for their community or organisation, so naming examples would only embarrass those involved. Nonetheless, it is important to learn from real experiences – the examples below do just that.
Damaging long term relationships
Sometimes in life sciences you can be presented with an opportunity that you feel is too good to miss. So you run with it, and refocus your entire short and medium term strategy and energy to it in totality. Unfortunately, by doing that, you may lose sight of the need to work with stakeholders beyond this single issue. As such, you risk undermining wider partnerships, so that, when you come to the next issue, you find those who were previously engaged have moved on to other things or been isolated by your tunnel vision.
Disappointing your community
When an issue is in front of you, it is easy to focus on one set of stakeholders and forget to build in feedback loops with your community. Once you have the information that you need from your community, it is easy to think that just achieving the goal is all they will care about. But the truth is that if you fail to feedback on progress and utilise their skills and expertise throughout the process, it will mean they will be reluctant to engage in the future.
Unintended consequences
Sometimes campaigning on an issue will lead to highlighting an issue elsewhere. You may have been presenting a possible solution, but by lifting the rock have exposed a lot of other issues – either in your data or service delivery. This can be tough, as you may have put work into one area resulting in the need to then shift focus or go back and look at your data. This is definitely something to embrace, it can be an exciting new challenge and will ultimately lead to better long-term outcomes if you get the right data on issues you need.
It bears repeating that these things are rarely due to people acting in bad faith. Indeed, often quite the reverse is true; a dogmatic dedication to achieving goals for the community can lead to short-sightedness and a loss of focus on long-term sustainability. However, it is possible to mitigate this risk. One of the best ways to do this is to ensure that, at all stages of a project or campaign, you have people around you who are willing to play out the other side of the argument and explore the consequences. For small founder organisations, this can be difficult, but professional networks and partner organisations can help fill this role.
One final piece of advice is to keep at least one eye on the long term. Long after individuals have been and gone, your organisations and community will still be here, and they will need to have credibility for the next opportunities that present themselves!