In the plenary session on providing primary care for refugees, one of the speakers, Kim Griswold, shared an image, now familiar to many, that is designed to help people to understand the difference between equality and equity. It demonstrates how some people start off at a relative disadvantage and need extra help to be able to achieve or access things that more advantaged people are able to experience easily. This image, and similar ones, have been criticized by some social justice thinkers who point out that the illustration implies that disadvantaged individuals (or their families, or their communities) are “metaphorically shorter” and need more support, which, if we think about it more carefully, is an example of deficit thinking — an ideology that ‘blames’ victims of oppression for their own situation. To develop the metaphor further, in the case of refugees and immigrants the fruits are usually actually further out of reach for them, and their disadvantage is not entirely because they are shorter.
One interesting question raised by plenary speakers is whether refugees should be seen in special refugee health clinics or whether services in usual primary health care provision should be able to meet the needs of refugees. There are problems with both options and there didn’t appear to be a clear answer although ‘special services’ seemed to be the direction most were going. But perhaps more cross-discipline systematic working to develop a way to deliver health and social services more holistically and usefully is a better overarching goal. I think that by creating special services for which some (in very very bad circumstances that they have to be able to demonstrate convincingly), we run the risk of allowing others, who are just-about-coping-but-not-coping-optimally, to fall through the cracks. As health care providers we have to come out of our ivory towers and get users and other skilled people to help us design the system.
I’m not and never have been a refugee. But as I’ve mentioned in previous blogs I’ve been an immigrant twice and I can tell you that even for a well-educated, white, female doctor and her family the “fruit” can be out of reach. For many reasons….legal barriers are the main thing. In my present adopted country, I and my family were not legally entitled to public health care for a some months after arrival in the country (it’s to deter health tourism and I understand and accept that). Of course, that didn’t stop my husband from having a bicycle accident, a garage door accident and an acid-burn-to-the-cornea not-so-accident in those first few months, which cost me dearly when costs of immigration were already high. Now I’m in a situation where my work permit extension, while granted, has been lost in the mail. Although I have a stamp in my passport that makes my status official, without the right document in my hand I cannot apply to have my family’s health cards re-issued. So I have to have conversations with my family that go like this: “Be careful at soccer practice; don’t get injured; remember we don’t have health care…” Sure, I’m relatively privileged and I can pay. But there are the teeth-sucking and judgmental looks that come with presenting to the ER without a health card that I’d prefer to avoid and fears about what it will take to get a repeat prescription when regular meds run out. Even after we did enough residence time to qualify for health care, finding a family doctor in our new home town was no easy thing. Most physicians are ‘full with no waiting lists’. This is a problem for any new arrival to our growing city, not just immigrants. I work at the Canadian Medical Association Journal; a colleague’s husband is a doctor; through networks of friend, colleagues and neighbors she found a family physician who was not taking new patients but would take me and my family as a favour. Phew! But what about people who do not have those sorts of contacts? I don’t know what to do or where to go in a strange place but I have people who speak my language whom I can ask, and I know how to find out where to look for information. My ‘height’ disadvantage is small and I can reach some fruit. What about people with language, financial, literacy barriers…for whom that very high fruit is just too damn high? And what about people who have suffered great trauma who must relive it every time they have to tell their story to be able to access some service that they really need? Really, we just have to make basic healthcare something that everyone can access no matter where they are from or who they are, because it is better for everyone if everyone is taken care of.
One way in which we could make health care more equitable and remove barriers to access is through technology. From Frances Mair’s talk about large scale digital health deployments we might think that we’ve seen more failure in that area than success. Policy makers see tech in health care delivery as a panacea but there is a large translational gap. There have been major (and expensive) failures internationally e.g. Connecting for Health in England, which has been roundly criticized for its exhorbitant expense, failure to make contractors accountable, and dismal outcomes in terms of improved health and access. The Dallas programme was all set to change self care by dragging it into the digital age…”transforming services through a ‘digital first’ philosophy”. It wasn’t rolled out in a RCT – it was about delivery at scale. It was a 3 year long term qualitative study. Lessons were learned at every level. Risk and liability were big issues. It’s one thing to provide apps for the worried well but it’s a very different challenge to provide apps for managing illness and disease, especially because the commercial companies are not as interested in that. Dallas highlighted many issues around information governance, accreditation and clinical endorsement. Clinicians need to know if a product is safe before using or recommending it. Infrastructure is a big barrier, particularly access to high speed internet. Some old hospital systems were not fit for purpose and WIFI is not always available in medical practices. Marketing is key but challenging. Skills deficits among health care practitioners must be surmounted. Self monitoring is appropriate for some sectors of the population but there is a risk of inadvertently widening inequalities if we don’t think about populations.
Once again, I wonder if we are doing enough to ask people (users) what they want and to leave no one behind. I’m reminded of an interesting project I heard about at the AMMI CACMID infectious diseases conference earlier this year. Byron Berenger from an Edmonton not-for-profit company called ICCHANGE presented on their pilot of an open source, cloud-based electronic medical record system in 2 slum communities in Kibera, Nairobi. The aim is to improve health for poor and transient people. This project fascinated me because the patients own their own records and will have access to them when they move on. It encourages ownership of health and a sense of purchase. Of course ICCHANGE is looking for funding to expand…Despite the funding challenges I think this is the approach we should take. Start with patient ownership. We need to learn from tech solutions that work in Africa where access to internet and access to care issues are widespread and yet being surmounted. Developing world tech solutions come from the right end. They are not developed out of the best thinking of academics in ivory towers who know not much of the challenges facing real people, and they are not contracted out to big tech companies who want to make money and can’t deliver what’s needed.
Talks by award winners are often engaging. Ronny Gunnarrson’s presentation was no exception. He did a fantastic (and entertaining) job of making some complex epidemiological principles immediately accessible to a general audience. He compared flipping a coin with available tests for group A strep: 3-4 Centor criteria, rapid antigen test, culture, isothermal PCR and PCR. He looked at the different factors involved in making a decision about treating streptococcal sore throat using different options. [Remember that you should always go to a different room from the patient to conduct the flip-a-coin test.] But we also need to know if a patient is a carrier of GAS, or infected. Relying on clinical judgement is not a good approach.
Wim Lucasson reflected on his work in diagnosing pulmonary embolus in primary care. PE is more common than we may have thought and often overlooked (but perhaps we know this now because of more sophisticated imaging that has allowed us to recognize smaller pulmonary emboli). PE is always near top of the list of most frequently missed diagnoses. Wim talked about the ‘Chagrin Factors’. In evidence based medicine we look at rules and guidelines and positive predictive value but we tend to overlook the doctor-related emotional factors. He put a name on a feeling many of us might recognise when facing dilemmas in clinical practice. If faced with a healthy individual in whom you are unsure if they may have a PE, you might refer to hospital or reassure. If you refer to hospital and are wrong this represents a major action for a minor problem. If you take the passive option and are wrong this is a minor action in the case of a possibly lethal problem. Mark Ebell asked an interesting question – could high sensitivity CT scanners be picking up small non clinically significant sub segmental pulmonary emboli and making a diagnosis that is not clinically significant? It’s stressful. It’s tough at the coal face.
*Videos courtesy of Domhnall MacAuley*
The North American Primary Care Research Group Annual Meeting is being held from November 12th to 16th 2016 in Colorado Springs, CO. CMAJ is a co-sponsor of the meeting.