How to use patient centeredness as a framework for creating sustainable, high performance biomedical R&D consortia

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No one likes to have to repeat a long title of a concept, organisation or project. This is why we love acronyms. The best acronyms replace the full name and often you forget or never even know what the acronym stands for. Case in point: what does CAPTCHA stand for?

The problem is that sometimes using only an acronym can obscure a part of a title that is very important.

What does the ‘P’ stand for?

I began to support the development of the ERS SHARP CRC about a 1 ½ years ago. I knew that CRC was focused on severe asthma registries in Europe and since the heterogeneity of severe asthma is one of the main challenges in severe asthma research it was easy to figure out 'Severe Heterogenous Asthma Registry'. But I was confused by the 'P'. One of my first questions was "What does the 'P' stand for?".

The answer: “patient centeredness”.

The full title is European Respiratory Society’s Severe Heterogeneous Asthma Registry Patient centered Clinical Research Collaboration.

Even though the phrase patient centeredness might seem like it was stuck on to the title as an afterthought, it was not. 

We recently published an editorial[1] about the SHARP, and see it published reinforces the fact that patient centeredness is at the core of SHARP.

The 4 co-chairs of SHARP have been steadfast in their insistence that patient centeredness is infused into every aspect of SHARP. I have come to think of patient centeredness as more than just a concept. It is a framework around which biomedical R&D consortia can be formed.  

Patient centeredness as a framework

There are 5 ways in which patient centeredness was built into the design of the SHARP CRC. Taken together they form a 5 component framework which can be used for any type of biomedical R&D consortium.

  1. Involve patient stakeholders in leadership positions: In the U-BIOPRED project we had robust and meaningful patient stakeholder involvement [2] . One thing we all agreed could have done better was to have included patient stakeholders in the leadership. SHARP has done that with 2 co-chairs who are both individuals with severe asthma and patient advocates. They provide a different perspective and a different kind of expertise that we might otherwise not have available. Both have professional experience outside of medicine that allows them to provide a perspective that is different than that of a life science researcher.
  2. Convene a patient advisory group during the project design phase: We included a patient advisory group (PAG) in the process of  designing SHARP. This approach set a precedent for there a meaningful role of patient stakeholders. 
  3. Develop a stakeholder driven research agenda: There are 4 stakeholder groups engaged in SHARP. Clinician researchers/national registry leads, scientists, pharmaceutical companies, and patients. As is described in the manuscript, the stakeholder groups followed a process of meeting as a stakeholder group and then in mixed stakeholder groups to define the research agenda. It is not that the researchers are just ‘consulting’ patient stakeholders. Patient stakeholders are equal partners in the co-creation process.
  4. Re-orient all research questions towards patient centeredness: As you can see in the editorial, many of the SHARP research questions include patient centeredness. Most of those questions did not start out that way. The dialogue that took place in developing the research agenda led to modifications that made questions more patient centered. So, you can do more than just include a few patient centered research questions.
  5. Find the most direct path to meaningful impact: As the SHARP effort unfolds it has become clear that there is a lot of heterogeneity throughout Europe in the way severe asthma is characterized in registries. Thus, SHARP can have a direct impact by helping to harmonise efforts to deliver the best practices for severe asthma management across Europe by creating a common approach to registries of individuals with severe asthma in a manner that reflects clinical management of severe asthma. This is a direct path to meaningful impact. By aiming to deliver direct impact, you can increase the increase the engagement of stakeholders in helping to move innovations across the translational gap more rapidly.

A simple definition of the term innovation is ‘transformational change’. The SHARP consortium has already achieved a transformational change through a commitment to patient centeredness. This is just the beginning. As is highlighted in the editorial, the leadership and members of SHARP are ambitious as to what they aim to achieve. 

One of the differentiating characteristics of sustainable, high performance biomedical R&D consortia is the meaningful involvement of stakeholders. Improving the lives of patients is a high level motivator common to everyone engaged in biomedical innovation. The real value of using  patient centeredness as a framework is that it motivates all stakeholders to be engaged and to pull in the same direction. 

When everyone is pulling in the same direction, the amount you can achieve increases exponentially. It is for this reason that it is highly likely that consortium behind the SHARP CRC will be able to deliver on ambitious and transformational projects that directly impact the lives of individuals living with severe asthma.  

We are at a point in time in biomedical R&D where many of the easy wins have been achieved. We will only be able to change the future medicine by delivering ambitious and transformational projects. Viewing patient centeredness as framework is one of the best strategies for improving the performance and sustainability of consortia so that they can deliver projects that make a big difference. Every biomedical R&D consortium should follow the example set by SHARP and think about how it can become more patient centered.

If you want to find out more about how to build or sustain biomedical R&D consortia that can deliver ambitious and transformational projects that will change the future of medicine get in touch.

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[1] The Severe Heterogeneous Asthma Research collaboration, Patient-centred (SHARP) ERS Clinical Research Collaboration: a new dawn in asthma research Ratko Djukanovic, Ian M. Adcock, Gary Anderson, Elisabeth H. Bel, Giorgio W. Canonica, Hui Cao, Kian Fan Chung, Donna E. Davies, Céline Genton, Toni Gibson-Latimer, Dominique Hamerlijnck, Elise Heuvelin, Renaud Louis, Stephanie Korn, Maxim Kots, Namhee Kwon, Riad Naddaf, Scott S. Wagers European Respiratory Journal 2018 52: 1801671; DOI: 10.1183/13993003.01671-2018

[2] From tokenism to meaningful engagement: best practices in patient involvement in an EU project. David Supple, Amanda Roberts, Val Hudson, Sarah Masefield, Neil Fitch, Malayka Rahmen, Breda Flood, Willem de Boer, Pippa Powell, Scott Wagers and on behalf of the U-BIOPRED PIP group Research Involvement and Engagement 2015 1:5