Taking phrases like “patient engagement” and “patient partnership” off the buzzword treadmill and enabling them to go the distance in the marathon journey of transforming healthcare is not an easy task. It is, however, one that we are required to pursue in the name not only of superior health outcomes, but also in order to establish processes that properly respect the interests and perspectives of patients. The BMJ is to be applauded for taking the lead in facilitating meaningful patient partnership.
However, an important piece of the jigsaw is underplayed in the article’s articulation of the dimensions of patient participation. This is the phenomenon of patients (as well as their families, friends an others) playing a leading role in initiating and conducting health research – part of the wider phenomenon of participant-led research (PLR). Thus, in recent years, articles have appeared in reputable scientific journals that were the product of research proposals devised by and carried out by patient groups, often facilitated by online social media. These activities promise to bring significant ‘value-added’ to existing structures centred on investigator-led research within universities and corporations.1,2,3
Not only does this development deserve to be registered, and encouraged, in its own right, it arguably has interesting synergies with other elements of “patient partnership” set out in the BMJ article. For example, the status of patients in the peer review of research articles takes on a different shape if these patients are regarded not only as potential beneficiaries of research, but also as potentially leading research activity themselves. It is an important question how this augmented status should be reflected in journal peer-review procedures.
What is in prospect, therefore, is a patient-centered revolution that goes even deeper and has profounder implications, since it challenges the dichotomy of patient versus researcher, providing a further basis for disrupting hierarchical relations within the health domain.
REFERENCES
1. Swan M. Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem. J Med Internet Res. 2012 Mar 7;14(2):e46. doi: 10.2196/jmir.1988.
2. Vayena E, Tasioulas J. The ethics of participant-led biomedical research. Nat Biotechnol. 2013 Sep;31(9):786-7.
3. Vayena E, Tasioulas J. Adapting standards: ethical oversight of participant-led health research. PLoS Med. 2013;10(3):e1001402.
Rapid Response:
Re: The BMJ’s own patient journey
Taking phrases like “patient engagement” and “patient partnership” off the buzzword treadmill and enabling them to go the distance in the marathon journey of transforming healthcare is not an easy task. It is, however, one that we are required to pursue in the name not only of superior health outcomes, but also in order to establish processes that properly respect the interests and perspectives of patients. The BMJ is to be applauded for taking the lead in facilitating meaningful patient partnership.
However, an important piece of the jigsaw is underplayed in the article’s articulation of the dimensions of patient participation. This is the phenomenon of patients (as well as their families, friends an others) playing a leading role in initiating and conducting health research – part of the wider phenomenon of participant-led research (PLR). Thus, in recent years, articles have appeared in reputable scientific journals that were the product of research proposals devised by and carried out by patient groups, often facilitated by online social media. These activities promise to bring significant ‘value-added’ to existing structures centred on investigator-led research within universities and corporations.1,2,3
Not only does this development deserve to be registered, and encouraged, in its own right, it arguably has interesting synergies with other elements of “patient partnership” set out in the BMJ article. For example, the status of patients in the peer review of research articles takes on a different shape if these patients are regarded not only as potential beneficiaries of research, but also as potentially leading research activity themselves. It is an important question how this augmented status should be reflected in journal peer-review procedures.
What is in prospect, therefore, is a patient-centered revolution that goes even deeper and has profounder implications, since it challenges the dichotomy of patient versus researcher, providing a further basis for disrupting hierarchical relations within the health domain.
REFERENCES
1. Swan M. Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem. J Med Internet Res. 2012 Mar 7;14(2):e46. doi: 10.2196/jmir.1988.
2. Vayena E, Tasioulas J. The ethics of participant-led biomedical research. Nat Biotechnol. 2013 Sep;31(9):786-7.
3. Vayena E, Tasioulas J. Adapting standards: ethical oversight of participant-led health research. PLoS Med. 2013;10(3):e1001402.
Competing interests: No competing interests