Friday, 11 July 2014

Leadership and Patient Advocacy for Research


Recently, I was invited to give a short presentation at the European Society of Oncology Masterclass on Patient Advocacy in Baveno, Italy. I was a stand-in for Simon Denegri who was moving house and can only say that I hope he moves house on a frequent basis. 

During the event I spoke with a number of people including Jan Geissler, Susan Knox, Markus Wartenberg, Estella Lecointe, Bettina Ryll. Amongst others I would include are Lindsey Bennister and Roger Wilson. These are individuals who have a defined roles in patient organisations locally, regionally, nationally and/or internationally. They are all key Ieaders in the sphere of patient advocacy in research across Europe.

I am therefore carrying out my usual practice of gathering and writing my own thoughts as to what I perceive this term leadership might mean in this context. I have tried to identify some of the observable characteristics as we will need to develop others to take on such roles in the future. I am beginning what I hope will become a dialogue.

My question, therefore, is simple...

How do we empower others, from individuals to groups, to become leaders who are effective in bringing about changes in research leading to better care, treatments and services?

The question is posed as an invitation to add, comment, disagree or at very least begin thinking about what it means for your group or specific condition.


The individuals, I have met, who are leaders for patient advocacy in research have direct personal experience of illness that has become a fulcrum and drive for action. 

They have, however, managed to create a physical space from the experience that has moved them beyond telling the chronology of their personal story. The narrative of what happened is subtly crafted into a refined and reduced summary used only when necessary to set the scene, clarify the facts or to make a point.

Their experience is a raison d'etre for helping others and not a repeated story. Their complete interest is in other people’s current experience and how they might be helped, not their own. Comment, opinion, praise or complaint about their health encounter/s is rarely mentioned.

These leaders have a strong understanding that research is an essential and integral answer to improving patient outcomes. This is especially true in the rare conditions whose work perfectly triangulates research, treatment and support in their meetings and conferences in a way that many others would love to achieve.

I am always struck by the external calmness and assurance of these individuals yet in more quiet conversation there is an internal impatience and steely determination to make a difference. These leaders in patient advocacy have a strong sense of purpose to advance their own group / organisation yet build a strong interdependence with like-minded others.

It may seem inappropriate to some but I would suggest that we attempt to create an advantage for others from what happened to us. By that I mean that we draw upon experience to advantage and not ‘take advantage’.


This leverage of advantage encourages, I believe, an attitude that is forward-looking and mostly positive. A manner is adopted that allows these leaders to be apparently comfortable in many different settings - patient communities, health professionals, academic and clinical leaders to departments of health and government representatives and ministers.

Leaders adapt to assimilate within these settings and promote dialogues whilst remaining clear about their role and thereby retaining a certain distance. They are willing to join the dots at different levels and in different places, learn and translate the information elsewhere.

There is a desire to find how to be effective and add value to research. Inquiring minds and reflective thinking are evident in the use of questions and the comments they make. These leaders listen and learn and are unfraid to express an opinion even if it is uncomfortable to others.

In many respects my own experience gave me a freedom to express my views. I felt was less encumbered and concerned with what others thought and more able to live life to the full. The change in attitude changed the way I behave.


One of the strongest characteristics I have observed, particularly for effective patient leaders in the context of patient advocacy is that they get on and get things done.

Policies and strategies are a means to an end not a laborious and long drawn out process. They get to the point quickly to make a difference for others even when the change takes a long time. Partnership working is normal yet does not detract from completing tasks. Difficulties are to be addressed, overcome and challenged to find solutions not an excuse to give up or do nothing. Websites, emails and other forms of social media are used to communicate with a broad variety of people.

These leaders act as catalysts to bring together senior academic and clinical researchers with scientists, patients and their carers. The meetings I have attended especially for rare diseases are about knowledge AND experiential transfer and not about information giving.

These are people who ask questions that invite people to find a solution. The use of confrontational questions and statements are used rarely and only after significant and lengthy dialogue.

There is strong evidence of the use of transferable skills, knowledge and experiences from competences and success developed in other fields of personal and professional experience. The leaders appear to translate an issue into another context to help interpret meaning or help others understand.

I have often thought that my experiences as a teacher supporting challenging young people was a good background. Behavioural change is as important for the school staff as it was for the young people and lies at the heart of developing a better relationship between experience and expertise.

So, what are your views? What do you think we should be doing to grow 'patient leaders for research' for the future?

1 comment:

  1. I like your blog….it’s very informative. Patient engagement is key to improving outcomes. This paper gives you the six key factors for success: