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Perspective interview - Kirsten Ahring

Perspective interview - Kirsten Ahring

PKU Academy Newsletter Winter 2011/2012 Kirsten Ahring talks about how online tools can improve education programmes

Kirsten Ahring talks about how online tools can improve education programmes and benefit clinical care

Kirsten Ahring, MSc. Clinical Dietitian at the Kennedy Center (Glostrup, Denmark), is a member of the Serono Symposia International Foundation (SSIF) Faculty and was a member of the Scientific committee for the Dietitians’ Workshop held in Lisbon, Portugal (March 2011).

During the Lisbon meeting, Mrs Ahring chaired the session, ‘Modern technology, communication and online education systems: can it improve care?’

Face-to-Face or Facebook?

Passionate about the opportunities for both patients and clinicians offered by online tools and new technology, Mrs Ahring told us it was essential to embrace new ways of communicating with patients, including social networking sites, chatrooms, forums and blogs.

Rather than seeing these new tools as a substitute for the close relationship that can form between clinicians and patients, Mrs Ahring stresses that their true value lies in their potential to make patients more engaged and create ways for them to share information with each other as well as with their clinicians.

For Mrs Ahring, the challenge facing clinicians today is not simply to grasp the new tools now available but to find the right balance between technology and personal contact.

The world before the web

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We asked her how she became such an advocate for the online world that so many find confusing or even threatening.

It really started, she told us, in the early 1990s when she was working with diabetic patients in Newfoundland, Canada, where non-attendance at hospital appointments is common.

‘This is an isolated area of Canada which means that if there’s a snowstorm or other weather disturbance, people can’t travel the long distances necessary to get to the hospital. We ran a study where we provided some patients with modems, allowing them to send in their blood sampling results weekly. After receiving the results I could then advise them and give them counselling over the phone.’

The experimental group was compared to a control group who brought their results in to a clinic every six weeks for a monitoring visit in the normal way. ‘We realised that the modem group really improved their compliance compared with patients who were asked to come in for hospital appointments every six weeks.‘1

Online and in demand

Much has changed since those early days but the lessons learned twenty years ago haven’t been forgotten. ‘We got Internet access at the Kennedy Center in 1997 and began to send emails. This changed the world completely. Today we have a website where our patients can go in, get instructions about blood sampling and order their amino acid supplement so that it’s sent to their doorstep. There are so many opportunities for them.’

Alongside the increased convenience for patients, Mrs Ahring believes that patients benefit in other ways too. New working practices, made possible by the Internet, allow clinicians to better identify and target the patients who most need support.

‘Every Wednesday we get blood results from about 100 patients and we choose certain groups: for example, everyone under 1 year old, all the maternal women, etc. We call them up, have a chat and ask them questions about their results. We can ask them what went wrong, what did they do and what can we do to help. This way, we get a lot of information instead of writing: “no good” or “too high”, because when you do that you run the risk of offending your patients and then, in some cases, you don’t get any blood for the next two years. When we call them up and offer this kind of support the response is often really positive.’

Teenage fads or the future?

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For young people, online forums and social media are a normal part of their life. Mrs Ahring acknowledges that engaging effectively with teenagers is a challenge but advises making it interesting for them to get in touch, ‘The Danish PKU parents’ organisation started a Facebook group and there are so many members there, including people we haven’t heard from for a while. We’re also using tablet computers and small personal devices (iPad, iPod Touch, etc.) with the DietWell™ App  (software for portable devices). Normally, if you ask a teenager to make a record they will say “No way” or, “It’s too much work” or, “It’s boring” but in this way it is fun and it is part of their life already.’

The success of these approaches has given the Kennedy Center team ideas for how they can use online tools to work more effectively with young people. A new online chatroom is planned that will allow patients to talk to each other with a clinician available at set times to answer questions and join the conversation, ‘It will be set up as a service to patients so that they know, every Tuesday at one o’clock there will be one of us there and we can chat very informally.’

Patients in control

Giving patients as much control as possible is easier than ever before. Mrs Ahring recognises that some clinicians still worry that if the patient doesn’t have to visit a clinic to get their prescriptions then they are less likely to come to appointments. This hasn’t, however, been the experience in Denmark, ‘We have used online ordering of amino acid supplements for six or seven years in Denmark and we think it’s very convenient.’

But does the social interaction only happen online? How can we work with PKU patients, particularly teens in a way that combines the convenience of online services with meaningful personal support?

Focused and flexible

Mrs Ahring believes that the specialist care and support offered by the Kennedy Center is vital. Staff at the centre with different specialties work together and support each other so that patients can see the member of staff with whom they are most comfortable.

The staff know that the atmosphere of the centre and the closeness of the relationships they have with their patients and their families plays a huge part in achieving positive outcomes for patients, ‘We are like a part of their family, they will call us if something new happens in the family: something good, or bad or sad or whatever. We get them new-born and we keep them for their lifetime. They don’t transfer to an adult clinic, they stay with us and again, when you feel there is feedback from the patients that they are happy about the care we give them it’s a very nice feeling.

‘We have this story about a young guy, he’s a professional ice hockey player and when he won his first gold medal he came to the Kennedy Center and gave it to us and said “this is thanks to you”, so we have it on the wall’ Mrs Ahring told us.

Peer to peer networking

Mrs Ahring described their annual summer camp for children between seven and fourteen years of age. ‘We try to educate them in a fun way and we try to show them how so many other kids drink amino acid supplement every day. We tell them “here you [the patients] are the normal, we [the clinicians] are the non-normal.”’

Mrs Ahring explained how they also engage the older PKU patients who are 18, 19, 20 years and just graduated from high school to help out at the camp. ‘They come and get paid for one week and the children really think “this is fun, we have care-takers who also drink amino acid supplement and we are one big happy family.”’

When the parents come to pick their children up, Mrs Ahring finds that the children ‘educate’ their parents about what they have learnt. This is very gratifying for The Kennedy Center team. ‘They will say, “Oh Mum I learnt it is better to take the amino acid supplement right here instead of right there” and “I have a bad habit, you know.”’ Tangible differences are seen afterwards in terms of adherence ‘we see the blood results, very beautiful, right after’ Mrs Ahring commented.

 

1 Ahring KK et al. Telephone modem access improves diabetes control in those with Insulin-Requiring diabetes. Diabetes Care, 15(8):971-975, August 1992.