“Why can’t providers decide what information should be put into [a patient's] My Health Record?” That was a question from a clinician in an Australian Digital Health Agency (ADHA) webinar about proposed automatic upload of pathology and radiology results into My Health Record. In shining paternalistic spirit, many clinicians in Australia still favor protecting patients from some information rather than making healthcare information about a patient available to that patient, who can then choose whether or not to look at it. The ADHA representatives were very politic in their responses, using phrases like “clinical safeguards” and “appropriate”. I hope the Department of Health sticks to their principles of patient empowerment.
Gibson defines patient empowerment as “A social process of recognizing, promoting, and enhancing people’s abilities to meet their own needs, solve their own problems, and mobilize the necessary resources in order to control their lives.”
Knowledge is a huge part of empowerment: “If patients are to be empowered, they must have sufficient knowledge about their health and sufficient control over decisions related to their health.” Brian Chapman has spoken about forms of epistemic injustice patients suffer by not having the knowledge needed to manage their healthcare.
Clinicians are certainly important partners in providing that knowledge. But the amount of time people spend with their physician is miniscule, and as the ways to collect personal health information increase, the amount of information collected by individuals overshadows that collected by the healthcare system. I moderated a webinar hosted by Sian Slade where Sara Riggare from Uppsala University shared an infographic she made that illustrates that:
Sara wrote her dissertation about management of her own Parkinson’s Disease through collecting and tracking data. “Self-tracking is my most powerful weapon against PD”. You’ll be amazed at her story
Sara coined the Swedish phrase “spetspatienter”, which means patient lead users, which she defines as patients or carers who “meet their health-related challenges in a constructive and knowledge-based way” and “make use of their own experiences to improve healthcare, on all levels of the system.”
Well, what do clinicians think about empowered patients or spetspatienter? We’ve all seen this mug, and there are many reactionary posts to that smug statement. With ChatGTP, there’s more hope and fear for patients seeking knowledge through AI chatbots.
Sara and colleagues set out to answer the question in Sweden and found very positive responses by healthcare providers about encountering empowered patients, even saying it is positive to learn from patients! I wonder if the results would be different in Australia (good MS project?).
Perceptions of healthcare professionals when encountering empowered patients
That doesn’t mean there aren’t valid concerns about this changing relationship between providers and patients. One study respondent remarked
Intellectually, it is generally positive with knowledgeable patents and informal caregivers, however, emotionally there is one negative aspect. There is a concern of getting out of balance in my profession if they are highly competent and at the same time critical… If so, they might not feel confidence in me as a healthcare professional and this will aggravate our partnership. (Nurse, Specialized healthcare, Data collection two)
Trust will play a big part in empowering patients. Trust in the value each party brings to the relationship but also trust in data.
Patient empowerment requires that patients trust the information that healthcare professionals and their electronic health record systems provide.
I would add that participatory healthcare requires that clinicians trust the information that patients and carers bring to them. This will require validation of new data sources, changes in attitudes of clinicians, and also new ways for patients share their data with providers. In the podcast Never Delegate Understanding Sara says,
People talk about patient-centred healthcare. I’m a doctor-centred patient…I lay down information bit by bit to see how much they can take.
Very interesting about the positive response from clinicians. My view has always been awareness about the disease and treatments is critical for patients but the professional really has much more to offer for the whole picture sort of speak. I guess I am more aligned with the Google mug!