There is a joint consensus across regulators, researchers, medical communications professionals, patients and caregivers that it is essential to include the patient voice across all research domains. Applied to publications, this directive is driving a gradual evolution in processes to incorporate the patient voice. Some quality research and guidance exist to provide the initial framework for positive partnerships with patient communities.
“There’s been a move away from health care provider led scientific exchange toward a more diverse, inclusive approach that includes patients and caregivers”
Karen King, Executive Vice President Medical and Scientific Services at OPEN Health
Although research and guidance exist, we remain at a stage where, as a community of industry professionals, we are challenged to implement practical approaches that provide positive outcomes and experiences for all stakeholders, while continuing to deliver robust scientific outputs.
1. Contact patient-advocacy organizations
Patient-advocacy organizations have close relationships with patients and families, as well as deep knowledge of patient needs, treatment goals and frustrations. Partnering with your advocacy colleagues and connecting with an established patient-advocacy organization is a great way to establish meaningful partnerships with a patient community. Close liaison with your colleagues will assist in efficient engagement recognizing the limited resources these groups often have.
2. Build trust
Get to know the members of these organizations, and thoughtfully listen to them to better understand their objectives and priorities. Be open to sharing your objectives, articulating where you see value in collaboration, and answer questions truthfully and transparently. Give the organization space and time to make decisions, and be flexible in your plans so you can meet their needs.
3. Identify representative patient characteristics
The patients most active in advocacy organizations or most eager to contribute are not necessarily the most representative voices. “The input we want may not necessarily be available with the patients who come forward,” said Jasmine Malone, Head of Patient Content at OPEN Health. “Patient involvement needs to reflect the average patient.” Identify the demographics — age, sex, race, socioeconomic status, health literacy — of typical patients. Include caregivers’ voices where appropriate.
4. Be inclusive
Facilitate inclusion among the patients who have the lived experience you need, rather than accepting the most easily accessible patients. Addressing barriers to participation can increase the size and diversity of your patient pool. “Patients experiencing serious disease and those from lower socioeconomic backgrounds can’t easily participate, which is to the detriment of the overall quality of patient voice that you get,” Malone said. “It’s up to the professional stakeholders to ensure you get the right level of inclusion.”
When — and How — To Involve Patients in Publications
According to the 2022 Good Publication Practice guidelines, “Patients and patient advocates may be included in publication planning and development, including as authors or contributors to publications, as appropriate to the topic or therapeutic area.”1
Applying this guidance into practical advice, OPEN Health experts have identified three primary points for patient involvement:
- Publication planning
- Publication development
- Post-publication engagement
