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Role of parent-initiated digital imaging in paediatric clinical practice
  1. Mahmoud Motawea1,
  2. Maria Digby1,
  3. Russell Banks2,
  4. Marilyn Whittle3,
  5. Govind V S Murthi1
  1. 1 Paediatric Surgical Unit, Sheffield Children's Hospital NHS Foundation Trust, Sheffield, UK
  2. 2 Information Management and Technology, Sheffield Children's Hospital NHS Foundation Trust, Sheffield, UK
  3. 3 Legal and Governance, Sheffield Children's Hospital NHS Foundation Trust, Sheffield, UK
  1. Correspondence to Govind V S Murthi, Paediatric Surgical Unit, Sheffield Children's Hospital NHS Foundation Trust, Sheffield S10 2TH, UK; govind.murthi{at}nhs.net

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Parent-initiated digital photographs are being increasingly provided to clinicians and allied health professionals (AHPs) by parents as a complement to the history of their child’s clinical illness (figure 1). This can be in the form of a photo or video shown to the clinician or AHP in a face-to-face setting or remotely via email transfer or by screen sharing during a video consultation. Such digital images may also be contained within a referral letter. Such images can assist with the treatment of new referrals and follow-up of patients as well. On receipt of such images, the clinician is obliged to act on it as felt appropriate—as with conventional forms of clinical information—and arrange a response that could be an email response, remote consultation (phone/skype/video call) or a face-to-face meeting (emergency or elective). In our practice, we have noted that even if the information contained within such parent-initiated images may be incomplete or irrelevant to the clinical question being asked, to provide a timely response to an expectant parent is best practice.

Figure 1

Collage of pictures taken by parents that have helped with diagnosis. (A) ‘Lump’ that appeared following defecation and was associated with pain and bleeding—patient underwent ileocolonoscopy to remove a solitary large rectal polyp; (B) significant bleeding per rectum in a 7-month-old male infant—laparoscopy detected a Meckel’s diverticulum which was resected; (C) ingrowing toe-nail with recurrent inflammation and granulation—patient was listed for surgery via telephone clinic appointment on the basis of this photo; (D) left inguinal hernia that was not evident during clinical examination in clinic—this picture in combination with a good history was diagnostic and patient was listed and operated; (E) photo of haematuria following renal trauma—patient was discharged home and parent sent images for serial observation of resolving haematuria; (F) postoperative scald injury following day case surgery under general anaesthesia, parent sent in this photo 2 days later—healed, cause unknown, possibly thermal injury from warming blanket.

While this trend has evolved slowly over the last two decades, its applications are rapidly increasing and evolving because of the exponential rise in the use of remote clinical activity and the ubiquitous availability and increasing usage of photos and videos by the general public on their personal devices.1 Such change in practice has been embedded by the need for social distancing and remote working due to the current pandemic. It has been facilitated and empowered by digital platforms that are now universally available and accessible. Reassuringly, Nair et al 2 and Wyatt et al 3 surveyed patients’ perception of using smart devices for medical photography in a tertiary ophthalmology centre and showed its increasing acceptance.

The use of information obtained from parent-initiated images in clinical decision-making has both advantages and disadvantages (table 1). Studies that have reviewed such practice in a paediatric setting include the diagnosis of inguinal hernias,4 anal swellings of a transient nature5 and infantile haemangiomas.6 Videos of movement disorders, for example, epilepsy, can help the clinician confirm the diagnosis and monitor treatment regimens. Similarly, rare and unusual conditions, if captured on the phones of alert parents, can help with diagnosis and possible resolution of problems. While our literature review was unable to find any evidence of false positive cases arising from the use of patient-led diagnostic imaging, this is a potential clinical risk of such practice. A suggested list of possible applications of parent-initiated imaging in paediatric clinical practice is shown in box 1.

Table 1

Clinical implications of use parent-initiated photographs in clinical practice

Box 1

Possible clinical situations where parent-initiated imaging could be used

  • Transient stridor

  • Seizures and other movement disorders

  • Colour change/’spelling’—pallor, cyanosis

  • Gait/posture

  • Vomiting—colour, nature (projectile)

  • Haemangiomas

  • Wound monitoring—for example, glued or sutured wounds, central line exit sites

  • Rash—for example, allergic/urticarial, contact dermatitis

The technical, medicolegal and data security implications of such usage and transfer of digital images from parents to the NHS clinical sphere bear consideration. There is no central secure mechanism for non-NHS individuals (parents/patients) to get digital material into the NHS. The recent pandemic has exacerbated this issue and NHS staff have struggled to support patients who wish to take advantage of technology.

The NHS has high-standard mechanisms and processes in place to manage security of material it has within its borders. For material outside this border, it relies heavily on external suppliers and vendors to provide appropriate tools. However, where the boundary crosses between material coming into the NHS email system (NHSmail—a national secure collaboration service for health and social care in England delivered in partnership between NHS Digital and Accenture) or going out of the NHS email system to non-NHS personnel, current tools and processes struggle to keep up with user practice or are not available. Imposed limits, for example, email size, make the tools hard to use in the real world. The National Email system (NHS.net) restricts the size of attachments, for good reason. However, this often puts a barrier in place when emails are over this size limit. This is becoming increasingly common for non-NHS personnel who wish to communicate using this technology. Many external users wishing to communicate with NHS staff will not have the technical abilities or the desire to be manipulating the material they wish to send to the NHS just to comply with fixed constraints. Therefore, users tend to circumvent or even not to use the available technology leading to a compromised situation. An example of this is where patients attempt to compress files to smaller sizes using software tools such as Winzip, only to find the email system will not accept files of this type.

However, given the existing need for non-NHS users to send information into the NHS digital space in a secure way, practical guidance in this matter is provided in table 2. It is recommended that NHS staff ensure that such images become part of the patient’s medical record through their internal processes and are deleted from their inboxes.

Table 2

Guidance for parent/patient email communication with NHS staff

The source of a clinical photograph (patient/parents phone/device, physician or AHPs phone/device), the location of storage (secure Hospital/NHS approved computer, electronic record, smartphone app), method of transmission (email, text, social media platforms), the duration of their retention and further/future forms of usage (education, research, publication) and extent of audience (colleagues, meetings, conferences) are all factors that require careful, educated and serious consideration in relation to the safe and appropriate usage of parent/patient-initiated imaging for the purposes of clinical care.7 These issues would apply to any other forms of digital information transfer, for example, audio files, scanned documents, too.

The NHS should play a greater part in raising the awareness of patients and families in good practice in this matter and provide simple and informative advice on the best methods to employ for taking advantage of new technology safely to assist in the provision of high-quality care. We suggest departments/hospitals in the NHS set up official email addresses to receive such digital information.

Ethics statements

Patient consent for publication

Acknowledgments

We would like to thank the parents for consenting to have the images of their children published.

References

Footnotes

  • Contributors GVSM conceived the project. GVSM, MM and MD contributed to the main manuscript. RB and MW contributed to the sections on Information Technology and Legal aspects respectively. Consents were obtained by GVSM and MM.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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