Professor Jacky Hayden
Dean of Postgraduate Medical Studies
The North Western Deanery, Department of Postgraduate Medicine and Dentistry, Manchester, UK
Received date: 6 October 2005; Accepted date: 17 March 2006
Aims This paper aims to highlight the obstacles typically encountered as a result of the Data Protection Act when using medically qualified practitioners as research participants. Method As part of the ‘Doctors’ Career and Retirement Choices’ study, 47 medically qualified individuals have been interviewed, 21 have participated in a questionnaire pilot study and 534 in the main questionnaire study. The limitations encountered concerning data protection throughout the research,have been logged and are presented in this paper.Results During the study’s progress, a number of difficulties arising from The Data Protection Act have been found relating to doctors’ participation in the research. They largely include difficulties in accessing doctors’ contact details, problems with individual interpretation of the Act, and anxiety around the sharing of data being detrimental to the study. Solutions to the difficulties encountered include recruiting samples via websites, holding individual contact details in the public domain and via colleagues’ personal networks. Conclusions While data protection presents obstacles to conducting research where doctors are the key sample group, there are effective methods of overcoming them.
career choices, Data Protection Act, medical practitioners, methodological limitations, retirement choices
This paper highlights the diffculties that can be encountered with respect to data protection when conducting research using medical staff as partici-pants. The North Western Deanery has initiated the ‘Doctors’ Career and Retirement Choices’ study in response to the nationwide problem of retaining doctors at the earliest and latest stages of their careers. The study aims to investigate factors influencing the career decisions of 1993–95 graduates from a univer-sity medical school, to gain information on the careerpaths of a representative sample of graduates, and to investigate why medical graduates leave medicine and/or the region in which they have studied to practice elsewhere. The study also involves consulting with medical professionals aged 55 years and over, with the aim of exploring decisions made around continuing to work versus taking early retirement, and focuses upon how they can be retained in em-ployment past the age of 55. The study aims to produce recommendations for how graduates and
overcome access problems to inviting individuals over 55 years for interview. This resulted in a purposive sample being identified by the deanery’s associate deans, providing a list of friends/colleagues known to fit the required criteria, and whom it was felt may be recep-tive to the invitation. These individuals received a letter and ‘information sheet’ from the dean of post-graduate medical studies. These documents informed them of the study, expressed the need for interview participants and explained through whom and how their name and known fulfilment of the criteria for participants had been provided. Those within the sample, who it was recognised had already retired and for whom a current home address was not available, were contacted through their last known NHS depart-ment. A cover note was included which emphasised the importance to any other person opening the letter on their behalf, of replying to us if a forwarding address was unknown. This was to enable attempts to contact the addressee through other means, as well as to allow the accurate monitoring of response rates. On occasion, medical staffng departments agreed to forward let-ters, but only once proof had been given to confirm the identity of the research associate requesting this.
Following the initial diffculties in accessing poten-tial interview participants, further interviewees were recruited to both samples through existing partici-pants, by manner of the ‘snowball effect’. Thus each graduate interviewee was requested to pass on the research associate’s email to any suitable friends/ colleagues not listed on the Friends Reunited website, and all ‘over 55’ interviewees were asked if they could suggest any friends/colleagues whom the postgraduate dean could also approach by letter.
As postal addresses listed in The Medical Directory were also unable to be used to contact the ‘over 55’ sample with questionnaires, a subscription was pur-chased for www.specialistinfo.com.
This website lists practicing consultants’ contact details free of charge, for use by patients and other healthcare professionals. It holds the details of approximately 70% of all UK medical consultants and was used to identify 596 North West consultants aged 55 and over to receive ques-tionnaires.
Third parties’ had numerous concerns, including anxiety around acting against The Data Protection Act, which made them reluctant to share information with the study and made them exercise rigorous checks with their senior personnel in response to our requests. While significantly less could be done to address this issue, organisations were offered financial reimbursement to cover any costs incurred if they would contact potential participants themselves on the North Western Deanery’s behalf. This would have entailed firstly the distribution of letters inviting doctors for interview and later the distribution of questionnaires, and would have avoided the supply of doctors’ personal details to The North Western Deanery. However, neither departments belonging to the university concerned, nor the GMC felt able to agree to this. Fortunately, those solutions already mentioned also resolved this.
The extent of the negative impact of The Data Pro-tection Act upon researchers has not yet become fully apparent. This should not detract from the many benefits which the Act has introduced in protecting individuals’ privacy, but perhaps more awareness of its limits and exemptions needs to be promoted. Among those parties with whom this particular study communicated, there was an assumption that The Data Protection Act dictated there to be no sharing of individuals’ contact details under any circumstances. Even highlighting the exemption from the Act of data used in research where participants’ anonymity is protected in its results, made no difference. This included the research team’s referral to relevant sec-tions of The Act which state that personal data may be used under the conditions, (a) that the data are not processed to support measures or decisions with respect to particular individuals, and (b) that the data are not processed in such a way that substantial damage or substantial distress is, or is likely to be, caused to any data subject.
Consequently, in a number of cases where requests and reassurances even from senior members of dean-ery staff were met with constant resistance, the study team began to consider whether the Act was almost being used as a means of avoiding collation and provision of data needed, especially where this task may have been onerous. This was particularly perti-nent in the case of the ‘graduate’ sample as the North Western Deanery had previously held many of the doctors’ details that were being requested, and so the justification for not providing these details was tenu-ous. These are lists of the region’s doctors in training that unfortunately were unable to be used by the deanery’s own means to gain a sample, as inevitably graduates from various year groups and medical schools are included, meaning comprehensive details of specified year groups from one particular medical school could not be compiled as necessary.
Following the GMC’s insistence that, in view of The Data Protection Act, details provided in The Medical Directory could not be used by the study to contact doctors for the purposes of research, such use was investigated. It was possible to gain confirmation that other researchers have used information from The Medical Directory in this way, both by contacting them directly, and via the observation of statements made to this effect in other published works.[3,4]
This thus illustrates how current legislation has the potential to bias research projects and jeopardise their worth if it is allowed. It would seem that, despite the great advance in protecting how information is stored and shared which the Act has brought about, it has in turn threatened to compromise the achievements and value of research and hence the evidence base available to inform good practice. Further analysis would be of great benefit to enable full and more objective com-ments on this matter, as it is recognised that while the diffculties encountered by the ‘Doctors’ Career and Retirement Choices’ study were diligently recorded, this paper has the weakness of presenting the experi-ences of only one case study, which may differ from those of others.
There appears to be a lack of literature relating to The Data Protection Act and its use in research, as a search of titles using Medline, The Cochrane Library and CINAHL resulted in only one relevant paper. This supported the ‘Doctors’ Career and Retirement Choices’ study’s findings, stating:
There is a need to balance patient confidentiality with the requirement to conduct vital, unbiased research ... The Data Protection Act (1988) is currently being interpreted in a number of different ways. We conclude there is an urgent need for consensus within the health service and academic communities.
This paper found diffculties in two other studies, with diffculties in the recruitment of participants being the main problem shared with the ‘Doctors’ Career and Retirement Choices’ study. Clearly, more work into this area is needed.
This study demonstrates that while a number of obstacles exist in research that uses medical prac-titioners as participants, in this particular study the main obstacle has been the diffculties experienced with data protection. A number of the problems encountered would not have occurred prior to recent advancements including the introduction of The Data Protection Act. For example, problems in obtaining and using individuals’ details for the purpose of inviting participation in research, would have been less significant. On a positive note, the use of websites to make contact with doctors as well as obtain their postal addresses as a solution, would have been un-founded and uncommon as little as 10 or 15 years ago before the introduction of the internet. Hence this paper highlights some very modern issues and how times are changing for the 21st century researcher.
It can be concluded that while The Data Protection Act has numerous attributes from the perspective of the public, for researchers it has introduced a potential impediment to studies where the recruitment of par-ticipants is vital to their advancement and success. From the earliest stages of a study, researchers now need to be aware of, and prepared for, the potential hurdles and time delays posed by this, as well as setting up contingency plans where problems could jeopard-ise work with rigid time restrictions for completion. Greater and widespread guidance on interpreting the Act is ultimately imperative, as is further investigation into how data protection is impacting upon research across the various fields.
Some of the diffculties discussed here are shared with researchers in other areas of study but a number are specific to medicine. However, as has been demon-strated, most can be overcome with a little determi-nation. It is hoped that as the ‘Doctors’ Career and Retirement Choices’ study continues, its methodological limitations will lessen, but that by sharing its diffcult-ies to date with others, lessons will be learnt and these obstacles avoided elsewhere.
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