Human or research subject

Want to build trust in clinical trials? Stop calling people ‘human research subjects’

See on Scoop.it

Dan O’Connor writes:

Pharma’s social media future lies in the recruitment of human subjects for research. Slow subject recruitment is one of the biggest barriers to advancements in medical science. Social media presents pharmaceutical companies, both large and small, with two extremely promising ways of enhancing the human subjects recruitment process:

1) Direct recruitment through disease-specific online communities, and

2) The dissemination of recruitment materials through online social networks.

Both these mechanisms are already being used, with some small-scale success, by pharmaceutical companies and contract research organisations to improve human subjects recruitment. The key challenge will not simply be to expand these efforts, rather it will be for pharmaceutical companies to pre-empt the inevitable ethical and oversight questions that social media recruitment raises.

Commentary from Andrew Spong

Pharma needs to begin by dropping the ‘human research subject’ nomenclature and calling people people. Or patients, or whatever else they want to be called (hint: ask them).

Why?

Because although both the points that Dan makes are valid, the language within which the concepts are couched is more than likely to alienate the very people that the industry wishes to build relationships with. These descriptions makes it sound like patients are being conscripted into a militia rather than being offered the opportunity to participate in a clinical trial. This is a counter-productive outcome, and one that could be easily avoided.

Patients don’t want to be ‘recuited’ as ‘subjects’. They want to be invited to particpate as people.

Patients don’t want to be viewed as the recipients of ‘recruitment materials’ that are ‘disseminated’ through the networks they use.

Rather, they want to be provided with compelling, relevant, personalised information from sources that present themselves in a credible, open-handed, friendly and trust-engendering manner as to why they should entrust their health to a clinical trial.

Well-meaning and well-established though it is, there is very little humanity or fellow-feeling in the rhetoric of clinical trial recruitment, and it should be deployed only in contexts that require its use (official, scientific, licensing-related) and never in patient-facing settings. This mis-step has to be corrected if the many benefits that patient-reported information can confer are going to be incorporated into the drug development process, to the benefit of all parties involved.]

Source: rmmlondon

5 thoughts on “Want to build trust in clinical trials? Stop calling people ‘human research subjects’

  1. Reblogged this on Clinical Research Management & Leadership and commented:
    A reflection about how to address the patients we would like to participate in our trials. I wonder if todays technological and social media approaches really will be successful in the long run. It will probably not take off before our children become patients – social media will be much more integrated in their lifes than in our generation.

    • Thanks for the reblog and for having taken the time to comment, Christian. The technologies are just steps along the way; the move from the acceptance of pronouncements to the expectation of dialogue has radical and far-reaching implications, however.

  2. Great point…demonstrating compassion includes using appropriate language for everyone in the healthcare ecosystem. We have been having discussions about what to call individuals (like seniors, disabled or chronically ill) who receive care from caregivers in their homes….we provide tools to service providers who provide care. We are using “care recipient” for now to distinguish them from the “family caregiver” who often requests the service from the home healthcare agency which is ultimately our direct “client.”

    • Thank you for having gone to the trouble of submitting a comment.

      Terms of reference are tricky for everyone involved, aren’t they? Some people have express preferences to the point that they perceive some terms to be pejorative. Others (often older service users) are less concerned, and view the ‘traditional’ descriptors as part of the healthcare process, engendering trust and confidence.

      The easiest thing to do is just to ask people :) And, of course, to ensure that we’re using healthcare IT that can cope with the preferences — or failing that, paper and pencil #OldSchool.

  3. Pingback: Pharma and healthcare innovation: ten steps forward « STweM

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