How can Patients take control of their own Healthcare?

Patient-centred healthcare is the delivery of more personalised healthcare, but it’s on the patient to take control and steer the direction of their healthcare based on their wishes, as well as their needs. 

At Access, we’ve previously talked about patient engagement and patient activation respectively, and their insights apply here, because patients receive one of two things: 

Proactive Care: The NHS defines Proactive Care as “personalised and co-ordinated multi-professional support and interventions for people living with complex needs.” The approach requires patients to be engaged in their own care so as to support a treatment regime and make appropriate lifestyle adjustments. 

Passive Care: Passive Care is the status quo. It is the idea that healthcare professionals know best so the patient should do as they’re told. This isn’t ineffective, but it ignores patient preferences – be that through a lack of confidence, comfort, or capability. 

The crux of personalised healthcare is that the patient or client is an active partner and participant, actively engaging with professionals in shared decision making to best maintain their wellbeing. This isn’t a case of palming off responsibility from clinicians to patients, it’s about empowering them to exercise their rights surrounding treatment and lifestyle, and to better support their mental health through more appropriate and fair treatments. 

For healthcare providers like the NHS, the delivery of patient-centred care requires a concerted effort to encourage patient activation and thus engagement with treatment. This leads us nicely onto our next segment about digital literacy and health literacy. 

To take control of your healthcare in an effective manner you need to have a good foundational understanding of your ailments or conditions, as well as the proposed medication and treatment options. 

A good clinician will enlighten a patient about these things, but with healthcare demand at an all-time high it’s not always possible to do so. This is where providers should be offloading some of the homework onto a patient, but again, many providers are still lacking in their signposting efforts. 

Our advice is to use trusted NHS or charity resources, or other official medical websites where possible. WebMD and AI software can be tempting, but we urge caution that these things are heavily contributed to and information may not have been properly scrutinised. 

Not everyone has a computer or a device for internet access though, and while local libraries can be a big help there, not everyone has the mobility or funds to travel, nor the digital skills required to browse the internet. When attending an appointment, speak with your clinician or other staff about literature they may have for you to take away. Leaflets are a common choice for GP surgeries and clinics for a quick and easy way to inform patients. 

A more recent step that people can take is to engage in social prescribing. This is where healthcare workers can refer patients out to support groups in the community, engaging in a range of activities to support their conditions or their mental health and promote better wellbeing.  

By brushing up on your problem and the proposed solutions, you can learn more about your care management and return with questions for a clinician. Perhaps there’s a term you didn’t understand, or a potential side effect of a medicine that worries you, or you found that the community-based support you were getting has been more beneficial than medication. Education develops your healthcare literacy, which in turn gives you the capacity to ask these questions and avoid any uncertainty or surprises.

It’s important to get the most out of your healthcare appointments. Waiting times and appointment duration make time a precious commodity, so we recommend the following: 

• Bring a written record of your complaint. This can be a diary of symptoms over time or a general statement of what’s wrong. Being asked to recollect your problems off-the-cuff in the moment can lead to details being omitted, and the more information, the better the diagnosis and recommended treatment.
• Prepare questions beforehand. Know in advance what you want to resolve and what concerns you have, and what to do if you continue to feel unwell or your condition deteriorates during treatment.
• Be firm but fair. Let the clinician utilise their expertise, but don’t be afraid to argue for your personal preferences.

The best way to give a person control over their own healthcare is through digital tools. We’ve already expressed the benefits of the internet and research, but more support is available. 

Many healthcare services, especially GP surgeries, are using patient portals to help display test results, to provide two-way communication, to handle patient feedback, and to allow patients to manage their appointments. The NHS App is helping to expand this to feature patients’ full health records and connect them to other services. 

Wearable technology is also being used for autism and frailty cases, to support greater personal independence, and telehealth too is becoming increasingly used for convenience. 

All of the above are important in helping move healthcare from being reactive to proactive. Budgets are tightening as populations grow and simultaneously live longer. Clinicians are still the experts and should still be trusted, but self-management has to become the norm long term. People need to know how medication routines work, how lifestyle impacts health and wellbeing, and how to identify symptoms – especially regarding continuous conditions like asthma or diabetes – and that’s where digital resources can do tremendous work.  

One concern, albeit something that will diminish over time, is that there are some older people who will struggle to use digital health tools, and that’s where service providers and community support, as well as friends and family, need to rally round and help those individuals adapt. In our article on the 10-Year Plan and a Digital NHS, we reported that “an estimated 10 million adults in the UK still lack basic digital skills, and around 7% of households remain offline”.  

The NHS acknowledges this and is actively working with libraries and other local organisations to encourage digital learning and skills development, and it’s important that this drive continues.

It’s important to understand your rights as a patient. In the UK, this subject primarily revolves around the NHS and associated services.  

The NHS Constitution (primarily for NHS England) lists rights and pledges. They include: 

• You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.
• You have the right not to be unlawfully discriminated against in the provision of NHS services including on grounds of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status.
• You have the right to access certain services commissioned by NHS bodies within maximum waiting times, or for the NHS to take all reasonable steps to offer you a range of suitable alternative providers if this is not possible.
• You have the right to be treated with a professional standard of care, by appropriately qualified and experienced staff, in a properly approved or registered organisation that meets required levels of safety and quality.
• You have the right to be cared for in a clean, safe, secure and suitable environment.
• You have the right to be treated with dignity and respect, in accordance with your human rights.
• You have the right to be protected from abuse and neglect, and care and treatment that is degrading.
• You have the right to accept or refuse treatment that is offered to you, and not to be given any physical examination or treatment unless you have given valid consent. If you do not have the capacity to do so, consent must be obtained from a person legally able to act on your behalf, or the treatment must be in your best interests.
• You have the right to be given information about the test and treatment options available to you, what they involve and their risks and benefits.
• You have the right of access to your own health records and to have any factual inaccuracies corrected.
• You have the right to choose your GP practice, and to be accepted by that practice unless there are reasonable grounds to refuse, in which case you will be informed of those reasons.
• You have the right to express a preference for using a particular doctor within your GP practice, and for the practice to try to comply.

These are just some of the many rights within UK healthcare. This might be NHS-focused based on our citation, but it applies to public and private healthcare. The core themes are that services should work together for patients and provide support, all whilst being respectful and maintaining personal dignity.  

It’s important that patients are aware of their rights, and we recommend further research into additional rights regarding things such as data protection and complaints procedures.

It’s all well and good knowing your health and knowing your rights, but if you can’t advocate for yourself and articulate your wishes or concerns then that knowledge has little impact. 

We’ve already stated how you should be firm but fair with clinicians, but should that not work then there are steps that can be taken. The first is to bring a partner, family member, or friend along for support in the next appointment. They may be more capable or comfortable to engage with the clinician. This can be especially helpful in cases where a patient has cognitive difficulties or mental health problems. 

If a clinician or practice is particularly stubborn then there are three levels of escalation still available to a patient. 

1. Speak to the clinic or practice manager, or the Patient Liaison Team at that location. These are the go-to people for resolution of problems.
2. Formal complaints can be made to the clinic or practice, or to the commissioner – usually the Integrated Care Board. This has a 12-month time limit and requires a description of events including dates but is a more serious escalation.
3. If neither of the above work, the Parliamentary and Health Service Ombudsman (PHSO) can be contacted and take up your case. They assess your case, decide whether a complaint is valid and warrants investigation, and can then provide a ruling or mediation to resolve matters.

Lifestyle plays a role in person-centred healthcare. Community Healthcare and Neighbourhood Care are both rapidly becoming more important for governments as a way of delivering better value care and more personalised care, but again, patients have to be activated to participate in advance of any problems arising. 

Better knowledge and respect of aspects like sleep, nutrition, exercise, and mental wellbeing are all areas that the public can do better in. Many popular applications are helping track sleep quality, heart rate, calorific intake, and mood, and informing users of their status and offering small, achievable health goals to improve their lives. 

Of course, a person’s health isn’t solely their responsibility. Professional intervention is often needed, but by paying more attention to yourself you have a better understanding of your norms and your limits, which will allow you to seek help sooner – giving clinicians a better chance of resolving the problem.

It’s all about you, but it’s not all on you…

Nobody is expecting a patient to be a subject expert, but the best quality healthcare requires a combined effort from patient and clinician to diagnose early, treat effectively, adhere to professional guidance, and live a lifestyle that doesn’t encourage illness or deterioration in conditions. 

For the patients, you have to be willing to learn and engage. Register for the patient portal apps. Read up on conditions. Take your medication as prescribed. 

For the clinicians, services need to be encouraging patients. Small, regular actions form long-term habits, and successful outcomes breeds trust and positive reputation. Make sure to offer educational resources for patients and to encourage their engagement, their involvement, and their curiosity.