Research in Neonates Survey: For Clinicians and Families

Sandy Sundquist Beauman, MSN, RNC-NIC / November 2018

Last year, I was invited to be part of the International Neonatal Consortium (INC). This group is a non-profit organization whose mission is to accelerate the development of safe and effective therapies for neonates. The consortium engages the global neonatal community – families, neonatal nurses, academic scientists, regulators, pharmaceutical investigators, advocacy organizations, and funders – to focus on the needs of the neonate. Through teams that share data, knowledge, and expertise, INC advances medical innovation and regulatory science for this underserved population accelerate the development of safe and effective therapies for neonates. It is internationally represented and includes representation from families, neonatal nurses, academic scientists, regulators, pharmaceutical investigators, advocacy organizations, and funders.

The INC exists for the purpose of advancing medical innovations and regulatory science for the underserved population of neonates. INC accelerates the development of safe and effective therapies for neonates. The consortium engages the global neonatal community – families, neonatal nurses, academic scientists, regulators, pharmaceutical investigators, advocacy organizations, and funders – to focus on the needs of the neonate. Through teams that share data, knowledge, and expertise, INC advances medical innovation and regulatory science for this underserved population.

Therapies for Neonates chart

The International Neonatal Consortium (INC) is part of the Critical Path Institute. This diagram represents the interest groups in the INC.

The importance of neonatal research

One of the issues recognized in the neonatal population is the need for research expressly for this population.  Those of us who have worked in this field for any length of time have heard (and perhaps even told others) that neonates are not small adults, nor are they small pediatric patients.

The research may be easier, specifically getting consent, but just because it works in an adult doesn’t mean it will work in a neonate – or that it will work in the same way.  There are far too many examples of just such cases where the result in the neonatal population was much different or even worse!

Research related to the treatment of cancer is well accepted. Patients and families of patients who have a new diagnosis of cancer often search out research studies for new hope, or the possibility of a better outcome. Having been in a role where it is my job to approach families for consent to include their infant in a research study, I have experienced many different reactions. But rarely has that reaction been one of anticipation of a better outcome for the infant.

Some families withdraw at mention of “research” without even having heard the details. Even some of my nursing colleagues have seemed shocked that we would do research in such fragile infants. My response is that without research, it is all an experiment, but without safeguards and protections.

Improving efforts in neonatal research

Therefore, as one of the efforts of the INC, we developed a survey to determine what the knowledge and beliefs are about research in neonates. That survey has versions for parents, nurses/nurse researchers and neonatologists/physician researchers. It is intended to obtain the respondents perspective in 5 key areas including:

  • Role of research in neonatal intensive care units
  • Education and training of neonatal personnel on the role of neonatal research
  • Current communication flow in the NICU
  • Research consent process
  • Research results disclosure

The results of the survey will be published for the purpose of increasing communication about research in the NICU.

I would like to invite you to participate in this survey, which can be found here. Feel free to send the link to anyone else who may be interested in completing the survey, including families who currently or in the past have had experience in the NICU, or your physician colleagues.

It is important that we receive input from healthcare professionals who are and who are not involved in research. The beliefs and knowledge about research of every healthcare professional that a family comes into contact with is important.

It is not always just about new research, but also research that has been done, results published, and whether they are, or are not, put into clinical practice.  And, if put into clinical practice, is it in the appropriate population?

Thank you for your input! Your participation will help this International Neonatal Consortium survey return valuable results.

About the Author

Sandy Sundquist Beauman, MSN, RNC-NIC

Sandy Sundquist Beauman has over 30 years of experience in neonatal nursing. In addition to her clinical work, she is very active in the National Association of Neonatal Nurses, has authored or edited several journal articles and book chapters, and speaks nationally on a variety of neonatal topics. She currently works in a research capacity to improve healthcare for neonates. Sandy is also a clinical consultant with Medela LLC. You can find more information about Sandy and her work and interests on LinkedIn.

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