Domhnall MacAuley is an associate editor on CMAJ, currently at the The Cancer and Primary Care Research International Network (Ca-PRI) conference in Winnipeg
Derek Stewart, a patient advocate, gently gave us a powerful lesson on integrating the patients’ perspective into cancer research. He emphasised the need to speak up on behalf of those who had no voice- a message poignantly underlined by his own loss of speech from cancer of the larynx in 1995. His message was about patient participation, involvement, and engagement and what he said was relevant to all medical researchers.
Some guiding principles:
Your research must be relevant to patient needs which, he said, is not always true in secondary care. With respect to cancer in primary care- “what you are doing is what we are interested in”.
Look at demographics. Cancer is now a chronic disease, reflected in the new cancer vocabulary where we now talk about survivorship. So, cancer patients are not focused on their cancer alone but on learning about co-morbidities and risk factors.
Patient involvement should be more than window dressing. Patients should be fully involved in the design of research and in improving the quality of the process. Engagement means shared decision making. Patients have an integral role and can help researchers avoid some fundamental mistakes. Derek quoted D’Arcy Holman, chair in public health, University of Western Australia, who said that patient involvement helps avoid the black holes. But, bring patients in from the start, think ahead and plan. And, for example, don’t ask patient partners to comment on a grant application two days before submission!
Listen, even when you don’t want to hear. Remember that, if your patients group appears troublesome by asking hard questions, they are just doing their job. One role of the patients group is to ask the awkward questions and to point out when “The emperor has no clothes”. So, ensure from the outset that both patients and researchers are clear on their expectations from patient involvement. If you invite full involvement, you must take patients’ views on board.
And, if there is meaningful patient involvement do include an explanation in your research papers of how this influenced the conception, development and execution of the work. Simply saying there was patient involvement is not enough, tell your readers how it helped so they too may benefit in the future.
A few practical hints:
Have your meetings in a different venue- don’t ask patients who have been through a traumatic illness to come back to the hospital. The sights, sounds and smells of the hospital inevitably bring back difficult memories.
Include adequate resources for patient engagement. Provide refreshments that are meaningful-patients have given up their personal time to help you. Pay expenses now, today- don’t ask patients to fill in a form and pay them in 6 months.
Start gently then move on. Don’t flood patients with intricate details of your proposed research immediately. Allow patients to tell their story but then put it aside. Doctors also need to put aside their “ah yes well but” approach too.
Say thank you. Send a personal thank you card and not an email. Show you care and value their views. And, later, tell patients what happened: Did you get the grant, complete the research, and publish your work?
Advertise that your hospital, unit or practice is involved in research- patients like to know that you are trying to improve the evidence base. Patients are, not so much passionate about research but, passionate about what research can do. They want the best evidence based care available.
Derek finished with a story about a high profile research institution that was very proud of its achievements and widely advertised its research credentials. He saw on their website that they wanted patients to get involved so he clicked through and was directed to the next page- encouraging patients to leave their body to science. As Derek said, he was hoping to get involved a little earlier.
Read more on Derek’s blog