The Government is putting patient-centred care at the heart of health by rolling out its Patient Activation Pilot scheme to another 37 Trusts – good news for people with long-term conditions who want to be empowered to manage their own care.
The Patient Activation Measure (PAM) is a validated tool which captures the extent to which people feel engaged and confident in taking care of their health and wellbeing, helping professionals tailor support to better meet their needs.
NHS England announced a deal to grant 1.8 million people access to the tool as part of its developing Self Care Support programme, and invited local NHS organisations and their partners to apply to use them in their areas.
Last week 37 bids wereconfirmed and will see use of the tool spread across England.
For example in Blackpool, PAM will be used to support frail elderly patients with multiple long-term conditions and at high-risk of an emergency admission. Knowing their level of activation will help the service to adapt their interventions so they are appropriate to the patient’s current level of confidence, knowledge and skills.
“We know that many patients want to be equal partners in their own care – supported to manage their conditions and keep themselves well, and empowered to make decisions about the services they do need,” said Anu Singh, Director for Patient and Public Participation and Insight at NHS England.
“The Patient Activation Measure helps to break down the traditional divide between patient and professional which has prevented this in the past, while ensuring that those who need the most support receive it.”
A difference of perception
This divide between professional and patient was in evidence at the annual meeting of the British Society of Gastroenterology in Liverpool this summer. A number of sessions covering a variety of long-term conditions uncovered a gulf in doctors’ perceptions of patients’ health and the impact of disease states in daily life.
Let’s start with obesity, which a fascinating session concluded was a natural consequence of today’s environment. It discussed how being overweight changes the biochemical composition of your gut permanently and how dieting will only further this process. Britons also underestimate the amount of calories they consume by a third – if we were eating what we told our doctors we eat we’d be losing not gaining weight.
So GPs need to be able to identify patients who are becoming overweight and intervene early. Yet in one study, when shown photos of people, clinicians consistently underestimated their weight and classed too many overweight patients as normal.
Someone’s weight is easy to gauge: if you don’t trust your eyes then use the scales. So if we are not doing well with something as visually apparent and easily quantified as body weight what happens when you deal with an issue as subjective as pain?
This is now an important issue in the management of irritable bowel syndrome with constipation (IBS-C) a condition characterised by pain and bloating.
Changing one word in the Rome 4 classification has halved the prevalence of the condition. In the latest update to the Rome 4 classification, “discomfort” is out and “pain” is in. Changing that one word has halved the prevalence.
Discomfort vs pain
Is one person’s discomfort another’s pain? How can clinicians measure this?
In this instance Rome 4, a scale designed to guide clinical trials, has the potential to have a massive impact on clinical practice and diminish patient care and access to treatment in a condition that reportedly has a bigger impact on people’s quality of life than diabetes.
This emphasis on what can be learned from clinical practice rather than clinical trials is growing. No more so than in the use of biologics in inflammatory bowel disease (IBD), as new products and biosimilars hit the market clinicians and patients alike need answers on what the risks and benefits are of all treatments. Given that patients are likely to lose response to these agents over a number of years, data is required to work out the best switch protocols.
The IBD Registry holds data for 3,000 patients. From that data it can be seen that a biosimilar and original product have produced the same outcomes for patients in terms of efficacy and adverse events.
But in a satellite looking at what patients really want in ulcerative colitis, a form of IBD, it was clear clinicians and patients have different perceptions of disease activity. While physicians have looked at mucosal healing as a marker of success patients still suffer symptoms. What patients want, the session concluded, is an absence of symptoms and as normal a life as possible. Patient Reported Outcome Measures (PROMs) are needed to guide future research and goals for treatment.
Common sense care
It seems common sense that people will be move activated and involved in their care and adherent to their treatment if the outcome meets their needs rather than to produce outcomes that can be measured in a clinical trial.
Fundamentally PAM, PROMs and involving people in their own care requires clinicians to have different conversations and consultations with patients. PAM is a very useful tool in starting that process. But clinicians and healthcare teams also need support to change and to learn how to have these new conversations where people become equal partners in their care.
We all know that change takes time and that people need new skills to change. At Oyster we are working with Flow Consulting to deliver motivational interviewing (MI) programmes to help teams engender change and empowerment with their own patients. We recognise this cultural change takes time and requires a whole team approach which needs nurturing.
The PAM is not a one-size fits all tool, rather it will give an indication of where patients are and their ability to take on aspects of self-management for their care.
Ability levels vary from person to person, which makes understanding and measuring an individual’s level of activation so important. Care teams will need to ‘meet people where they are’ and tailor support and services to individual needs.
As MI guru William Miller said: “People are the undisputed experts on themselves. No one has been with them longer, or knows them better than they do themselves. In MI, the helper is the companion.”
For healthcare professionals to become companions in people’s journeys with long-term conditions rather than instructors they will need support to change.
For further information on MI training contact Oyster on 01273 601996.
Published on: August 10, 2016