Monday, June 13, 2016

Building a Foundation for Partnerships with Patient Communities

By April Schultz, Content Marketing Writer, Forte Research Systems

In a recent article published on the Forte Clinical Research Blog I define and highlight the importance of community engagement in clinical research. The article describes the need for sites and sponsors to communicate and engage with patient communities and advocacy groups. Such engagement empowers patients to become stakeholders in the industry and forms collaborative partnerships built on mutual respect and trust. These partnerships also aid the industry’s efforts to make trial design and conduct more patient-centric by allowing patients to have more input on the clinical research process. It seems many research organizations see the value in engaging patient communities, but are either unsure how to begin a partnership or are using ineffective community engagement methods. To successfully involve patient communities in the clinical research process, it’s important to develop a solid foundation for your community engagement initiatives. This means determining how your organization will communicate with patient communities and defining their role in the clinical research process.



A Foundation for Community Engagement


While the foundation for your partnership may differ based on the needs of each patient community, you can form the groundwork of your engagement initiative using these five steps as a guide:


1. Set clear goals


Your community engagement efforts should meet the needs of the patients involved. To do this, it’s important to define goals for the partnership and provide a solid guide to achieving those goals. Communication is key to determining what is appropriate and beneficial for both parties. During the initial stages of your partnership, actively discuss the needs and wants of both parties and begin to outline feasible goals for everyone involved. Throughout the course of the partnership, regularly assess these goals and the steps that have been taken to achieve them.


2. Establish expectations for communication and involvement


Partnerships often work best when guidelines for communication and participation are established upfront between all parties. Clearly establish how your partnership with the patient community will function, who will be the main sources of communication and what resources are needed for an effective partnership.


3. Gain a better understanding of the community


Take the time to learn about the attitudes and practices of the patient community you partner with. Make an effort to understand the group’s culture, how they prefer to communicate and other practices or attributes that make the community unique. Knowledge of these characteristics can help foster a stronger and more personalized relationship between you and the patient community and may encourage more responsiveness from the group.


4. Promote transparency


In community engagement, transparency is a two-way street. Patient communities should be encouraged to provide candid, open contributions during discussion and community engagement events. In return, it’s important you keep the patient community updated on clinical trial progress. While regulations certainly limit transparency for some trial information, it’s still possible to provide information on trial outcomes, relevant enrolling studies and other updates on the disease area.


5. Uphold a long-term commitment


To gain the most benefit from partnerships with patient communities, and to build a trusting and open relationship, it’s essential that both parties maintain a long-term commitment to the initiative. Overtime, communication between both parties will continuously improve clinical research as a whole and support patient-centric clinical trials.



Catering to the Individual


As stated above, these principles can and should be flexible based on the needs and qualities of each patient community or advocacy group you partner with. Maintaining a quality partnership and making your clinical trials more patient-centric means adapting your engagement methods to the needs of the individual patient community.

This flexibility is essential to both strengthen your relationship with the patients involved and to help you meet the unique challenges of every patient community. For each community or advocacy group, the type and frequency of communication could differ and the need for sponsor/CRO provided training could vary. For small or new patient communities, administrative staff may be minimal and thus communication via email or digital means may be strained. For global patient communities, it’s important to be wary of the country restrictions on communications with patients and physicians, particularly online and social media content.

When establishing the groundwork for your community engagement efforts, be sure to take into account the unique needs of the group you’re working with and attempt to build a partnership that proves mutually beneficial and convenient.



References:

• https://www.hanc.info/cp/resources/Documents/Recommendations%202014%20FINAL%206-5-14%20rc.pdf
http://www.clinicalleader.com/doc/engaging-with-patient-advocates-to-improve-clinical-trials-0001?atc~c=771+s%3d773+r%3d001+l%3da&immediate=true



About the author:

April Schultz is the Content Marketing Writer at Forte Research Systems, a developer of clinical research software. In this role, she is responsible for the creation and direction of Forte’s educational materials such as blog articles, eBooks and webinars. She manages Forte’s content calendar, oversees content posted to the Forte Clinical Research Blog and works with presenters to host Forte’s monthly educational webinar series.




No comments: