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Patient partners add value to health research

Editor’s Note: This is the second in a series of regular columns on patient involvement in health care.

Involving patients and caregivers in research and incorporating them into health research teams has gained a foothold over the past decade, ultimately making research more relevant and focusing on what patients need and care about.

So, how can patients and caregivers partner on a project? The answer depends on the level of involvement the patient or caregiver partner agrees to. Research teams tend to be flexible and let the partners “pick and choose” which phase they want to be involved in.

In broad strokes, a research project can be considered a health research project if it falls under four main categories, as defined by the Canadian Institutes of Health Research (Canada’s principal administrator of health research funding):

Categories (or Pillars) of Health Research
Category 1

Biomedical research

Category 2

Clinical research

Category 3

Health services research

Category 4

Social, cultural, environmental and population health research

Example:

Studying cancer cells to develop new treatments that target specific molecules

Example:

Testing new wound care techniques to improve healing and scarring

Example:

Looking at how health-care services are provided and how to improve them

Example:

Identifying the factors that lead to better public health outcomes

 

Health research projects often overlap certain categories and don’t always neatly fall under those buckets.

Generally, the research process has six major phases, and each one has specific steps the team must complete before moving onto the next phase.

 

Research phase Questions applicable to each phase
1. Identifying the research question or problem and determining research priorities What do you want to know?

Why do you want to know this?

2. Developing the study’s design and methodology How will you find out the answer to your question?

Who in the research team will do what? When will you do it?

3. Executing the research methodology and process itself This is when the team performs the research.
4. Analyzing and interpreting the data and results What do the results mean?

What can be understood or learned from the data?

5. Communicating the results or outcomes of the research project Why was your study important, and did you answer your initial question?

If yes, what was the answer?

If not, why not, and what is the next strategy to answer the question?

6. Incorporating new knowledge and evidence into practice What do others need to know about your project? How can it help them in their work or future research?

 

This process applies to any kind of research, regardless of discipline – whether it’s in sociology, art, engineering or health.

Ultimately, it is up to patient and caregiver partners to determine what they deem to be a meaningful partnership and be involved to the degree that satisfies their criteria for meaningfulness. They do not have to be involved in every phase. For example, a patient partner can choose to be involved in Phase 1 and Phase 6 of the research process, but not in the middle. Similarly, a caregiver partner can decide to be involved only in Phase 4.

To outline the process, let’s examine how a patient can influence a health research project. The scenario below is fictional, but is inspired by many of the studies I have encountered or read about during my journey as a patient partner:

Phase 1: Identifying the research question, and determining research priorities

A patient with cancer participates in a program that provides remote diagnostic and monitoring tools to use at home to track the progression of the illness.

Initially, the research team wants to study whether the use of these tools contributes to better health outcomes with early detection of the effectiveness of a given treatment.

The patient partner adds an additional avenue to explore –  ‘what impacts do these tools have on the lives of patients’ – ultimately adding an element focused on patient experiences – ‘what are cancer patients’ perceptions and experiences with remote diagnostic technologies?’

Phase 2: Developing the study’s design and methodology

A traditional method of scientific inquiry is a literature review followed by individual interviews with patients. However, the patient partner suggests that the team facilitate and analyze focus-group discussions instead to gain insights from the discussions and diverse perspectives.

Phase 3: Executing the research methodology and process itself

The research team undertakes the literature review and adds the focus groups with the patient partner sitting in to facilitate discussion and provide their own insights.

Phase 4: Analyzing and interpreting the data and results

After the literature review is completed, focus groups recorded and transcripts coded, the research team and the patient partner group excerpts from the discussions into overall themes. The patient partner then uses lived experiences to provide insights on the themes and ensures they are reflective of patients’ comments or points out which are of particular interest to patients.

Phase 5: Communicating the results or outcomes of the research project

The research team produces a first draft of the study results with the patient partner suggesting changes or comments to ensure the discussions were captured appropriately and to ensure that the end-result of the project is what the patient partner proposed to study at the onset.

Following submission of a final research paper to a scientific journal, the patient partner works with the research team to convert the paper into a plain language, accessible format, and develop a communications plan to disseminate the results to other patients, caregivers and oncology-related health workers.

Phase 6: Incorporating new knowledge and evidence into practice

While the initial research proposal was to study whether the remote diagnostic tools provided better health outcomes, involving patients identified complementary health benefits and revealed challenges patients faced with the technology.

For instance, patients found the diagnostic tools helped their mental health because they felt more in control of their condition, and that wearing the device was a sign they were being monitored and would receive care if anything were to happen.

However, patients in the focus groups noted challenges they faced: some felt the devices were cumbersome; others were unclear on how to appropriately use the devices or how to troubleshoot error messages.

As a result, the benefits of the tools for patients led to continued funding for the program. Over time, the program head redesigned the tools to be more discrete and portable, and worked with patients to develop more accessible and understandable instructions and resources on how to use the tools and what to do if there is an error message when they first receive the device.

When done in a meaningful way, patient and caregiver partnership in health research can be tremendously valuable.

It means that the research is done with input from the people it’s meant to help, which ultimately makes the research more useful and relevant because it focuses on what patients actually need and care about. When patients and caregivers help design and carry out the research, more people are likely to join and stay in studies too.

Moreover, with patients and caregivers involved as partners, the results of the research can get shared in ways that various audiences can understand and make sense of, and the results can make a real difference in health research, healthcare delivery and clinical practice.

The authentic integration of patient partners in research teams makes health research better and more impactful for everyone involved, and everyone benefits.

 

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Authors

Maxime Lê

Contributor

Maxime Lê, MA, BHSc, is founder and principal of Lê & Co. Health Communication Santé, a bilingual health communications firm. He is a patient partner with The Ottawa Hospital and Ottawa Hospital Research Institute, serves on the Board of Directors of the Patient Advisors Network and co-chairs the Ontario Health East Patient and Family Advisory Council. In 2023, he joined the Equity in Health Systems Lab as a patient partner and investigator

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