Making the Partnership between Researchers and Patients Work
From Sherlock Holmes and Dr. Watson to Abbott and Costello, we know that partnerships between opposites can lead to solved mysteries and hilarious laughs.
In the case of researchers and patients joining forces in developing clinical trials, the stakes are even higher as they seek to make life-changing discoveries, together.
The trick is learning to recognize the assets each party brings to the relationship and work as a team. The roles of researcher and patient have been refined and reinforced over decades with a parent/child relationship firmly established. It’s only natural that a change in the role patients play and collaboration between patient and researcher is going to take some time to get used to. The approach is new, still evolving and models are still being tested.
Researchers, for example, have been trained to adhere to scientific methodology, often ignoring real-world urgencies for useful findings. Some may also question the value of patient involvement in the early stages and wonder if patients have the knowledge and skills necessary to contribute constructively.1
Teaming up researchers and patients can be a win-win for everyone as long as it’s treated like any relationship—with effort, enthusiasm and above all respect
Patients also have their own concerns. Some worry that researchers won’t listen or take them seriously. Many may be put off because they feel they don’t have enough scientific training, don’t understand the jargon and (most terrifying) will have to deal with statistics. Paradoxically, if the patients involved are “too skilled,” researchers may wonder if they are truly representative of others with the condition who aren’t included in the trial. Finally, patients may be apprehensive over potential conflicts of interest between the needs of the trial and their involvement with patient groups.1
Both groups may also share the concern that their collaboration could slow down the development process, delaying the trials and holding up the acquisition of knowledge and implementation of treatments.1
Fortunately past and current partner experiences have provided some useful recommendations and advice for best practices. Rather than focusing on doing what they feel has worked before, researchers from within pharmaceutical and life sciences companies do well when they are open-minded to new ways, accept patients as true partners, and value patient-centred outcomes that benefit the ultimate end user. Understanding what really matters to patients and being concerned about the patients’ benefits are crucial to presenting study findings in a way that is easily understandable and useful for patients—not just clinical researchers.2 Patients feel most valued as partners when they believe the researchers and companies are working for their same goal of finding safe, useful solutions as quickly as possible while still adhering to rigorous scientific methodology.
And the benefits of the “patient effect” can be great. The research may be more on target with patients helping refine and prioritize what is studied and also the way the trials are designed, such as how data is collected and analyzed. Patient participants may also question researchers’ assumptions and encourage thinking in new directions.1
From a practical standpoint, patient involvement may result in an increased number of study participants as they can offer recruitment suggestions, spread the word and serve as an example. They can also help with wider dissemination of findings through friends and networks and offer feedback on information’s understandability and usefulness to the general community.1
As patients move more toward directing their own healthcare they can gain untapped knowledge as well as an increased sense of self-confidence, usefulness and feelings of ownership in the process. On a larger scale, they can help encourage better understanding between patients and researchers on topics like how the trial is presented to patient recruits plus assist in directing the content of clinical trials to areas that are truly useful to people in real life.1
The key to success is finding the best ways to work together including pairing the right research project and principal investigator with the correct type of patients. The researcher should be able to interact well with regular people as part of the team while the patients need to have in depth knowledge and experience with the subject matter going in.1
Collaboration should start early with everyone’s roles clearly defined and realistic expectations set. Initial training and development for patient participants on research methods, statistics and understanding outcomes can also be helpful. Communication including feedback and acknowledgement of contributions are important too.1
Teaming up researchers and patients can be a win-win for everyone as long as it’s treated like any relationship—with effort, enthusiasm and above all respect.
Reviewed and amended on September 22, 2015