Tag Archives: research

SJebb_cropSusan A. Jebb is Professor of Diet and Population Health in the Nuffield Department of Primary Care Health Sciences, University of Oxford, UK. She is the conference chair for this week's Society for Academic Primary Care annual conference in Oxford.

 

It’s that time of year again when primary care academics take time away from their desks and surgeries and families to attend the Society for Academic Primary Care conference. This year, in Oxford, with a walking tour of the Botanical Gardens and dinner in the gothic splendor of Keble College Dining Hall on the programme, some of you may have faced the question I was forced to consider after an intense grilling from my son, 'what are conferences for'? ...continue reading

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Dr. Moneeza Walji, editorial fellow, interviews Dr. Amit Garg, nephrologist at London Health Sciences Centre and Professor of Epidemiology and Biostatistics at Western University. Dr. Garg and colleagues found that nitrofurantoin was less effective than other antibiotics for treatment of UTI in a large cohort study of older women, regardless of the women’s estimated kidney function. ...continue reading

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CMAJ is now offering author interviews as part of our regular podcasts. This week:

Audio interview with Dr. David Hogan, geriatric medicine specialist at the University of Calgary. Quinine sulfate is widely used off label to treat nocturnal leg cramps in Canada. Although modestly effective for this indication, the drug has many potential moderate and severe adverse effects.

Interview with Dr. Scott Garrison, associate professor in the Department of Family Medicine at the University of Alberta, and lead author of the prospective cohort study. This time-series analysis used data from BC for new quinine prescriptions, as well as search data from Google Trends. The authors found that nocturnal leg cramps display striking seasonal variability, with incidence highest in summer and lowest in winter.

Domhnall_MacDomhnall 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

Domhnall_MacDomhnall MacAuley is an associate editor on CMAJ, currently at the The Cancer and Primary Care Research International Network (Ca-PRI) conference in Winnipeg

Cancer is now a major primary care research area, which is reflected in the increasing importance and impact of the Ca-PRI conference. David Weller (UK) described it as a "boutique conference", but it won’t be for much longer. Cancer has long been the preserve of specialists focused mostly on treatment, and epidemiologists analysing data principally from registries. Sick patients and sad stories tend to attract greatest sympathy, research interest, and funding. Cancer diagnostic research in primary care is difficult, the symptoms are often completely undifferentiated and it’s hard to pick up the clues in a context where most patients don’t have cancer.

Late cancer diagnosis concerns physicians and patients alike but measuring delay in diagnosis is not easy. We need to use agreed definitions and Jaim Sutton (UK) in her systematic review of studies on ovarian and colorectal cancer, identified considerable variation within in the broad categories of patient interval, primary care interval and diagnostic interval, definitions used in the Aarhus consensus statement. For future research to be meaningful, we need to use agreed definitions.

Willie Hamilton (UK) pointed out a huge knowledge gap where delay in diagnosis is concerned: there are time lines for cellular growth, and there are time lines for symptom development but we don’t know how they are connected. These differ between cancers and cancer site and, as Knut Holtedahl (Norway) reminded us, more aggressive cancers are easier to diagnose.

Greg Rubin (UK) presented data showing improvements in speed of diagnosis of cancer in primary care in the UK in response to the National Awareness and Early Diagnosis Initiative. There were some small but significant improvements in practices that used at least one of the following: significant event analysis, practice audit, risk assessment and a practice plan. This against a background of considerable systems-change. Similarly, Henry Jensen (Denmark) showed improvement with standardised cancer patient pathways. But, many patients don’t quite fit within the criteria relevant to the UK two week rule or the Danish pathway—many tend to have serious and vague symptoms that are not necessarily indicative of cancer. Greg Rubin (UK) suggested, in the subsequent discussion, that we may need to create diagnostic centres for those who don’t quite fit. And, as pointed out by a patients’ representative in the audience, it is also difficult for patients to know when to go to the doctor.

Looking at the wider aspect of preventive care, Eva Grunfeld (Toronto), in her keynote address, told us about the BETTER trial, a cluster randomised factorial controlled trial that enrolled 800 patients across Canada in primary care. The trial was conducted in good practices but there was still room for improvement. The core intervention was that patients were given a preventive prescription, and it was unique in that it addressed chronic diseases with a facilitator already in the practices. It was effective and, interestingly, it was also effective in patients who had who had mental health problem—an often hard-to-reach group. While the economic evaluation identified costs, the practices also gained incentive payments. Now that trial has been shown to be effective the team are looking at dissemination and "adaption for adoption". The programme has already been taken up in the North West Territories.

A particularly successful conference innovation was a session including ten 3-minute presentations to the full conference audience. No introduction, no moderation, just a time keeper. Great presentations across the spectrum of cancer care from sophisticated diagnostic models in developing countries to hugely contrasting diagnostic challenges with extraordinary delay in the developing world. And some fascinating insights. There is major projected shortfall in oncologists in the US as a result of increasing cancer survivorship. And, in a systematic review of cancer mobile apps, one of the authors' major tasks was excluding those apps identified in the search strategy, that were created for astrology!

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Click for a link to the conference program