A painful topic: what doctors need to know (according to patients)

Ok, so I was wrong. I really liked the RACGP good GP television commercial. It had some flaws but I thought they were small in the grand scheme of things (see my last post). But many patient advocates did not agree and were unhappy about the lack of communication portrayed in the video.

Blogger Michelle Roger commented: “My current GP asks me what I want to do, what I think is most important and together we sort through the problem at hand and potential solutions. I feel valued and heard and trust her more knowing that she listens and knows me and my family.”

“That for me was missing in the video. It was one-sided and the patients appeared little more than props to be talked at. In fact the patients had no voice at all. A problem that still permeates a lot of medicine.”

Crockey health blog posted an article titled ‘The Good GP never stops learning: the RACGP video that made doctors cry – and patient advocates wince’. In a response to this article Irish blogger Marie Ennis-O’connor wrote on her blog: “We can’t just talk about a commitment to patient centred care – we have to live it. It is only by bridging the divide which places patient and doctor expertise on opposite sides that we can achieve more personalized and meaningful care of the patient.”

Patient blogs

I wondered why the patient opinion was so different to mine. On Twitter it was suggested to me that more doctors should read patient blogs to understand their view better. I thought that was a good idea so I asked for some recommendations and started reading.

I can tell you, it didn’t cheer me up but it was enlightening. It felt a bit like a refresher course “do’s and dont’s for doctors”. What I read was that, in the eyes of patients:

  • Doctors often don’t know how to deal with disabilities
  • Doctors sometimes blame patients for treatment failures
  • Some doctors find it hard to accept patients as experts
  • Doctors don’t always communicate well.

Now that I’ve read the blog posts I feel that I can better appreciate the patient response to the RACGP video – and I learnt a lot more along the way.

I have been given permission to share parts of these blogs and I recommend anyone who works in healthcare to read on. It may help to bridge the divide. Doctors beware: don’t expect flattery.

Empathy towards disability

Carly Findly
Carly Findlay: “Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.” Source: Carly Findly

In one of her posts writer and speaker Carly Findlay tells the story of how doctors gave up on her and told her parents to prepare for her death, and how she later met one of these doctors.

(…) “Over the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears. I think he was surprised to see me. I told him some of my achievements including how I am now educating dermatologists about my condition (something he needed when he treated me).”

(…) “Other people with Ichthyosis tell me that doctors didn’t give them a chance either. My friends have said that their parents were told they wouldn’t make it into mainstream school, that they wouldn’t have relationships or children, and that they would be social outcasts.”

(…) “The political models of disability can determine a person’s compassion and empathy towards disability. And so a doctor’s low expectations for a baby born with a disability can set the scene for their attitude through the lifespan of that patient.” (…) Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.”

Read the complete post here. Follow Carly on Twitter

Blaming patients

Caf
Caf: “I’m not sure that I truly trust any doctors, despite having a lovely GP.” Source: Rellacafa

Blogger Caf explains how doctors told her to see a psychiatrist when their attempts to treat her chronic pain failed.

“I had arrived at the appointment of the reveal, hobbling with a pair of forearm crutches. I could hardly bear any weight on the offending ankle. It didn’t take long for him to deliver his message, laced with condescension and arrogance. ‘There’s nothing wrong with your ankle. Why are you on crutches?’”

(…) “Chronic pain has been misunderstood and stigmatised for so long that many people probably don’t know what to believe. Even patients themselves often wonder if they’ve just gone crazy because their symptoms are so utterly illogical.”

Caf says that her experiences have affected her trust: “I’m not sure that I truly trust any doctors, despite having a lovely GP.”

Read the complete post here. Follow Caf on Twitter

Michelle also writes about pain in this post: “And there is a pervasive idea of the drug-seeker, seen in every patient who has chronic pain. That those who simply don’t get over pain and require ongoing pharmaceutical management are weak.”

“Friends who have used pain clinics tell stories of dismissal and blame. That they are not trying hard enough when they don’t recover, when I know the lengths they have gone to to try and alleviate their pain. And compassionate pain doctors who become the exception not the rule.”

The patient as expert

In another post she writes: “As a patient with an unusual, complex, and poorly understood disorder, 9 times out of 10 when I see a new doctor I am the expert in the room.”

(…) “I spend my spare time researching my disorders on Medline. I flip through Cochrane Reviews, and review consensus statements regularly. I read up on the drugs I’m taking and keep abreast of current research trials. On forums, I can ask questions of other patients.

“The constant fight to be heard is exhausting

Arm rash Michelle Rogers
Michelle Rogers: “I awoke to welts and rashes across my body. My pre-op information met with eye rolls, a sense that I was over-anxious, and thus completely ignored.” Source: Living with Bob (dysautonomia)

(…) “Some doctors are quite happy to acknowledge that I may know more about my disorder than they do. For example, my GP is happy for me to take the lead on my treatment needs. Even my cardiologist is happy to discuss my disorder in more of a collegiate manner, than the traditional doctor-patient relationship.”

(…) “Yet there are many others who are nothing short of dismissive. Should I dare to suggest a potential treatment or line of investigation the appointment can become adversarial. At times what I say is outright ignored.”

“Case in point my recent hospital admission. Despite having a red allergy band on my arm, sharing the information from my Allergist, and speaking to both my neurosurgeon, anaesthetist and senior nurse about my allergy to adhesives, I awoke to welts and rashes across my body. My pre-op information met with eye rolls, a sense that I was over-anxious, and thus completely ignored.”

(…) “The constant fight to be heard is exhausting. We are told that we must be our own advocates. That the future is patient-centred medicine. That rapport and making a patient feel part of the decision-making model leads to more compliance and more successful outcomes.”

New technology

Michelle: “Patients no longer live in a bubble where they are reliant upon their doctors as the only source of information. With the advent of social media and the ease of access to medical journals, patients can be as up to date, and at times, in front of their doctors, with regard to advances within their various disorders. We come empowered and informed to our appointments and have an expectation that our doctors will be equally informed or at the least, willing to listen and work with us.”

“We have an expectation that our doctors will be equally informed or at the least, willing to listen and work with us

“The medical community needs to be aware of the new ways information is being shared, especially the speed at which information can now travel. Instead of criticising patients for researching their ailments, they should instead be working with them, especially to direct them to more appropriate medically sound sources of information.”

“Patients are already distrustful of big pharma and the way research is funded. If their physicians also refuse to help them navigate these areas or are dismissive of their efforts, such distrust will also pass to them, to the detriment of both practitioner and patient.”

Read the complete post here. Follow Michelle on Twitter

Doctors who listen

Carly: “I went to hospital earlier this year. I was so sore, and a bit miserable. I saw a junior doctor, one I had not seen before. I spent an hour in the consult room, talking to her about Ichthyosis, but also my job, blogging, wedding plans, travel and the Australian Ichthyosis meet.”

“Their compassion means I am a human being first

“She said I was the first patient she’d met with Ichthyosis and she wanted to learn more than what she’d seen in the textbook. Her supervisor came in to provide further input into my treatment. Again, we talked about life, not just Ichthyosis.”

“And she told this junior doctor how lucky they are to have me as their educator. What a compliment. I am so lucky to feel empowered as a patient at my hospital. These doctors listen to me. They treat me as a person not a diagnosis. They see my potential and are proud of my achievements. Their compassion means I am a human being first.”

Try win-win instead of hardball

Teamwork is essential in healthcare. Yet, too often, we act as individuals looking after our own interests. Solving problems together, even if the objectives seem opposed, is beneficial for all parties for many reasons.

Stephen Covey introduced the principle of win-win in his book the Seven habits of highly effective people. It’s still a great principle for conflict resolution, incl in teams, groups, organisations etc. Covey:

Win-win sees life as a cooperative arena, not a competitive one. Win-win is a frame of mind and heart that constantly seeks mutual benefit in all human interactions. Win-win means agreements or solutions are mutually beneficial and satisfying. We both get to eat the pie, and it tastes pretty darn good!

A win-loose outcome is bad for all parties. Even though the winner may feel triumphant, the loser may not want to deal with the winner ever again.

So what’s required for a win-win result? First of all it requires an open mind. Black & white or good & bad thinking is not helpful and often not realistic either. Secondly, understanding the other party is crucial:  Where do they stand? What is important for them? Where is the common ground?  And finally: flexibility, as there are always more solutions to a problem.

Win-win is not about being nice, as Covey said. It’s about being courageous and considerate at the same time.

10 reputation management tips for doctors

A patient complained about a doctor on Facebook and generated a lot of online traffic. The story was reported in the newspapers. The Medical Board started an investigation. Pending the outcome the doctor relocated to another city. This left the local community without a doctor as no replacement could be found.

A year later the doctor’s name was cleared by the board. But the damage was done. And for many years the article kept showing up in Google search results in relation to the doctor as well as her old practice.

The good news is that I made this scenario up. The bad news: reputation damage can happen to all of us. Pro-active online reputation management should be part of a healthy risk mitigation strategy.

Here are 10 simple tips about how I manage my online reputation and improve Google rankings. You can do it too, it’s easy. It is applicable to your personal brand (your name) as well as your organisation.

#1: Respond to customer needs and expectations

Prevention is better than cure. Our managers act on complaints immediately, as negative comments have the potential to spiral rapidly out of control, especially online. Here is an example of how not to handle a social media crisis.

Our quality assurance committee starts its meetings with a ‘good, bad and ugly’ review of the past month. The group looks at any problems or feedback received, including e.g. Facebook comments. We’re not perfect by any means, but this approach allows our organisation to improve patient services on an ongoing basis.

#2: Create, promote, and update your own online content

Develop a professional website but don’t stop there! Start a Blog. Create social media profiles on LinkedIn and Twitter, and update your profiles regularly. This will improve search engine rankings so your own content will show up first.

#3: Interconnect your online profiles

This will further improve rankings. Splash pages like about.me help to connect your profiles in one place.

#4: Encourage constructive criticism and respond timely to feedback

Engage when people post comments. Respond preferably on the same day. Look at feedback as free business advice. Thank the reviewer and explain your point of view. We have learned from the comments on our practice website and practice Facebook page.

#5: Don’t argue online (and offline)

Set an example. Be a leader. I know this is not always easy, but an angry response is as bad as no response. Be aware that clients/patients/customers may be watching. Avoid deleting comments as this will usually not help your case.

#6: Monitor the web

Google yourself and your organisation at least weekly. Set up Google alerts for your own name and other brands or topics you would like to follow. Free services like peekyou.comSocialmention.com, and Veooz.com can be helpful. There are lots of other tools to watch your web presence.

#7: Correct and improve information on external sites

Most sites will update your details at no cost. Some sites like HealthEngine or HealthOptions Australia may have added your name and address but will only allow you to update details or improve your listing after paying a subscription fee.

If you feel a review about you or your organisation is incorrect or unfair ask the owner of the website to make amendments. If that’s not an option request to write a comment on the feedback. Google will only remove reviews if they contain unlawful content, are spam, off-topic or if there is a conflict of interest.

Google offers useful tips about how to respond to reviews.

#8: Improve positive content, push down negative content

There are many reputation management services on the web. They improve rankings and make it harder for negative content to show up high in search results. Brandyourself.com is a free reputation management tool to improve your personal search results. You need to have a social media profile and a website before you start.

#9: Be ready to engage with traditional media

Have an official spokes person. Consider media training. I like to give journalists a written summary of the main message our organisation wants to bring across.

#10: Know the rules

The AHPRA guidelines explain the advertising limitations under the ‘Health Practitioner Regulation National Law Act 2009’. The Good Medical Practice Code of Conduct includes principles about how to respond to complaints. If in doubt, ask your medical defence organisation.

If you want to know how not to use social media – and stay out of trouble – have a look at the AMA social media guidelines.