J Canc Educ DOI 10.1007/s13187-015-0862-8

REFLECTION

BEverybody Knows Everybody Else’s Business^—Privacy in Rural Communities Janni Leung 1,2 & Annetta Smith 3 & Iain Atherton 4 & Deirdre McLaughlin 2

# American Association for Cancer Education 2015

Abstract Patients have a right to privacy in a health care setting. This involves conversational discretion, security of medical records and physical privacy of remaining unnoticed or unidentified when using health care services other than by those who need to know or whom the patient wishes to know. However, the privacy of cancer patients who live in rural areas is more difficult to protect due to the characteristics of rural communities. The purpose of this article is to reflect on concerns relating to the lack of privacy experienced by cancer patients and health care professionals in the rural health care setting. In addition, this article suggests future research directions to provide much needed evidence for educating health care providers and guiding health care policies that can lead to better protection of privacy among cancer patients living in rural communities.

Keywords Privacy . Rural health services . Rural nursing . Rural population . Neoplasms . Quality of health care

How This Article Came About In 2014, the visiting author (JL) undertook a research trip to the north of Scotland, an area of scattered and remote rural and island communities in the far north of the UK, with the purpose of gaining insight into specific issues among cancer patients living in small rural communities. During that trip, the author had an opportunity to hear the reflections of challenges and concerns faced by rural cancer patients, family and friends of cancer patients, as well as health care practitioners such as cancer specialists, nurses and general practitioners. Aside from difficulties in accessing health care services, which are well-documented, one issue that became apparent through the reflections was the challenge of sustaining privacy. This was an issue which patients described as causing anxiety, with patients expressing worries about the gossip network in small communities. This concern is very likely to be found in rural areas beyond the north of Scotland. It is a concern, however, that is rarely identified and one which lacks an empirical evidence. A review of literature on health care privacy in rural communities revealed a dearth of evidence. This article therefore identifies key concerns which were raised by our informants that reflect on the importance of privacy among cancer patients living in rural communities.

* Janni Leung [email protected]

Why is Privacy Important for Cancer Patients 1

Policy and Epidemiology Group, Queensland Centre for Mental Health Research, Wacol, Queensland, Australia

2

School of Public Health, The University of Queensland, Herston, Queensland, Australia

3

School of Nursing, Midwifery and Health, University of Stirling, Highland and Western Isles, Scotland, United Kingdom

4

School of Nursing, Midwifery and Social Care, Edinburgh Napier University, Edinburgh, Scotland, United Kingdom

Meeting the privacy needs of patients in a medical setting has been recognised as a priority for patients and health care providers, as it protects patients’ rights and dignity and increases satisfaction with care [1]. Cancer patients are often older adults, and the potential violation of dignity related to privacy issues in older patients receiving palliative care has previously been documented [3]. In particular, a lack of privacy among

J Canc Educ

patients within rural communities can be a contentious issue for patients with diseases perceived as sensitive or stigmatising, such as cancer, which is often conflated with negative affect and fear [2]. Additionally, privacy of cancer patients can be made more difficult by the long-term chronic nature of the disease that often requires prolonged access to health care, from screening to diagnosis, treatment, as well as palliative care, which requires a greater period for privacy [1]. Therefore, patient privacy is an important factor to consider when providing health care to cancer patients living in rural communities, to ensure the care provided is dignified and respects individual rights to confidentiality, and so forth.

Reflections from a Rural Community on the Challenges of a Lack of Privacy Despite the importance of cancer patients’ privacy, it is a concern that was consistently raised by cancer patients and health care specialists within the rural area the author visited. A common challenge voiced was the lack of patients’ physical privacy when accessing health care services. For example, patients told of their visibility in hospital out-patient waiting rooms or as hospital in-patients. They also described how outpatients or visitors could walk through hospital wards and read the patients’ names on the door, which further compromised privacy. The need to travel to access treatment services may further compromise rural cancer patients’ privacy. Physical privacy is violated when patients fail to remain unidentified when they need to commute to the hospital on a regular basis. Cancer patients described how they may typically travel to a non-rural hospital on a Monday morning and return to their homes on a Friday evening regularly across 5 weeks, for a course of radiotherapy treatment. From this regular commuting schedule, people from the community, such as fellow travellers, were able to surmise that the patients may be in receipt of cancer treatments. Another challenge for the protection of privacy in the rural community is that the people can be very Bclose-knit^ or Beverybody knows each other^. Patients’ reflected that their privacy surrounding their disease had been unintentionally betrayed through casual conversations. This unintended betrayal of patient privacy was also raised by health professionals. Specialist nurses reflected that they often come across patients in public areas, such as in grocery stores. In these circumstances, social interactions may extend to a discussion about the patient’s medical condition. This could be difficult to avoid, but the content of their conversations would be exposed to others physically nearby, which may include someone who knows the patient.

Recommendations Challenges relating to patient privacy have been raised as a crucial factor as part of health care provision [5, 4]. However, empirical evidence and research on the privacy of patients in rural communities are lacking. With the recent public health push towards better health care and outreach programmes to under-served populations, such as rural communities, this article highlights an evidence gap that requires urgent attention. In conclusion, from the reflections of the rural community that provided the insights for this article, it is evident that patient privacy is often violated, albeit sometimes unintentionally. However, the privacy issues associated with living with cancer in rural communities have not received much attention in the academic, clinical policy and public health care contexts. While existing research in the field of rural health focuses on service access, this article highlights that the consideration of rural patients’ privacy should form part of health care provision. Research to further explore the experience of cancer patients living in small communities and their experience of privacy is warranted, as well as the development of an evidence-base that provides strategies to better protect privacy in the rural health setting. Acknowledgments We thank the breast cancer specialists and patients from small communities (who wish to remain anonymous for the protection of their privacy) for kindly giving their time and sharing their insights and experiences on the privacy issues. Funding The research was undertaken as a holder of a University of Queensland Graduate School International Travel Award. We acknowledge The University of Queensland Graduate School for providing funding to enable this research. The funder had no role in the study design, collection, analysis and interpretation of data. Conflict of Interest The authors declare that they have no competing interests.

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