TLDR: A new chapter I wrote, invited for a book on Personal Health Informatics, is out! You can read a summary below describing my chapter. You can also find a link to a full pre-print (a copy of my submitted, unedited version) of the article (as well as author copies of all of my articles) on my research page.
In November 2020 I was invited to submit a proposal for a chapter for a pending book on personal health informatics. Like journal articles, you can be invited to submit for a book chapter as part of a larger book topic.
Knowing that book chapters take a long time to come out, I carefully thought about the topic of my article and whether I could write something that would be relevant approximately a year after I wrote it.
The context of the book was:
“high-quality scholarly work that seeks to provide clarity, consistency, and reproducibility, with a shared view of the status-quo of consumer and pervasive health informatics and its relevance to precision medicine and healthcare applications and system design. The book will offer a snapshot of this emerging field, supported by the methodological, practical, and ethical perspectives from researchers and practitioners in the field. In addition to being a research reader, this book will provide pragmatic insights for practitioners in designing, implementing, and evaluating personal health informatics in the healthcare settings.”
They also wanted to include patient perspectives, which is part of the reason I was invited to submit a proposal for a chapter, and asked if I could write about citizen science from the patient perspective.
I decided to write more broadly about patient perspectives in research, and since the audience of this book is likely to be academic researchers and practitioners already in the field, seek to provide some ideas and input as to how they could think about practically inviting and engaging patient partners in research, as well as supporting the burgeoning field of patient researchers who lead their own research.
I submitted my draft article in April 2021; received feedback and submitted the revision in August 2021; and the book was due to be published in “spring 2022”.
The book is now out in November 2022, hooray! It is called Personal Health Informatics and you can find it online here.
Abstract from my chapter:
There are many benefits to engaging and involving patients in traditional, researcher-led research, ranging from improved recruitment and increased enrollment to accelerating and facilitating the implementation of research outcomes. Researchers, however, may not be aware of when and where they can involve patients (people with lived healthcare experience) in research or what the benefits may be of improving patient engagement in the research process or of expanding patient involvement to other research stages. This chapter seeks to highlight the benefits and opportunities of engaging patients in traditional research and provide practical suggestions for inviting or recruiting patients for participation in research, whether or not there is an established patient and public involvement (PPI) program. This includes tips for developing a productive working relationship and culture between researchers and the patients involved in research. There are also many patients themselves conducting research, and often without the benefits, resources, and opportunities made available to traditional researchers. Traditional researchers should identify and recognize researchers who have emerged from non-traditional paths who are driving and engaging in their own research, and provide support and resources where appropriate to foster further patient-driven research. This investment can lead to collaboration opportunities for additional highly relevant and effective research studies with traditional researchers in the future. This chapter provides examples of patient researchers and offers tools to support traditional researchers who want to support patient-led research efforts and improve their ability to successfully engage patient stakeholders in their own research.
Here are some of the highlights and recommendations from my chapter:
- Invite patients to participate in research, and do it early.
- Ask patients how they’d like to be involved in research.
- Relationship building and culture setting is important. Address the power dynamics within your project and team.
- Set expectations for everyone involved on the team.
- Consider training and skill-building opportunities for patients who are partnering in research.
- If you’re looking to support a patient who is already initiating or performing research, first ask: “How can I help?”. This article includes a list of suggestions of how you can help them.
This article also highlights many exceptional researchers who are patients and their work, including:
- Sara Riggare
- Sonia Vallabh and Eric Vallabh Minikel
- Stephen Keating
- Matt Might
- Janet Freeman-Daily and the ROS1ders
- Myself (Dana Lewis) and others in the diabetes space
Note the chapter discusses explicitly how not everyone has a PhD or an MD; this is not a requisite to doing high-quality research!
The chapter concludes with “clinical pearls’’, which are four suggested tips to use in daily practice, and includes some suggested resources like the Opening Pathways Readiness Quiz. It also includes a suggestion of making a “To Don’t” list in collaboration with patient research partners.
The chapter also contains two review questions:
- Imagine that you have a research project where you would like to apply for funding, and the funder mandates that you have a patient involved in your research project. At what stage do you involve a patient in your project, and how do you do so?
- You are at a scientific conference and observe a patient giving a presentation about their own research or project. They’re not a traditional researcher – they don’t have a PhD or have a day job as a researcher. You want to approach them and offer your help with their research. What do you offer when you approach them?
To see the answers to these review questions, check out the article in full!
TLDR: A new chapter I wrote, invited for a book on Personal Health Informatics, is out! You can find a link to a full pre-print (a copy of my submitted, unedited version) of the article (as well as author copies of all of my articles) on my research page.
If you’d like to cite this in one of your articles, note that the DOI for the article is https://doi.org/10.1007/978-3-031-07696-1_17 and an example citation is:
Lewis, D. (2022). Personalizing Research: Involving, Inviting, and Engaging Patient Researchers. In: Hsueh, PY.S., Wetter, T., Zhu, X. (eds) Personal Health Informatics. Cognitive Informatics in Biomedicine and Healthcare. Springer, Cham. https://doi.org/10.1007/978-3-031-07696-1_17