Research implementation

A detailed operational and research plan, prepared at the request of a major start-up funder, is available for review. In summary, it outlined a plan to approach the medical and family physician community in the target area to brief them on the concept, elicit comment and cooperation in order to tailor the approaches to the research methodology and to the target patient cohort.

In addition, research investigators will be recruited through public advertising and through word-of-mouth contacts in the medical communities targeted. Depending on the quality of candidates, training in either the basics of research principles or as refreshers to professionals will begin in earnest as the competences of candidates are identified. All investigators will work under the direct supervision of a research professional, initially the Head of Research, and will attain provincial qualification.

The target population is of two types – orphan patients and those served by a family physician. To reach orphan patients, advertising in local newspapers and outlets will allow the population to self-nominate and be triaged into trial, test and control sectors. Other patients will medical histories already available through existing or past medical records, will be apprised of the studies through their preferred medical professionals, and be triaged appropriately.

Initial contacts with candidates will use detailed and structured interviews rigorously designed to produce appropriate sector populations. Testing, intrusive or non-intrusive, will then be conducted appropriately for the condition to be researched.

Questionnaires and interviews will be continuously appraised and adjusted to improve the degree and nature of data to be gathered for the specific studies. They will initially be structured to confirm the expectations reported to apply to rural conditions. As interviews proceed and if other conditions deserving review or analysis present themselves, the questionnaires will be adjusted accordingly.

Medical conditions will not be evaluated, nor treatment modes recommended. Tested clients will be referred to medical treatment, either emergency or though normal referral channels, should medical conditions be identified that require medical intervention.

Forms relating to liability for information disclosed or discovered, and feedback processes about data gathering will be prepared to affirm the expectations of the studies and the involvement of clients.