Patient reported outcome measures (PROMs) are being used by health systems around the world to determine how effectively the treatment improves the quality of life. Patients undergoing hip replacement, knee replacement, varicose vein and groin hernia surgery with the UK National Health Service (NHS) are invited to complete questionnaires, with results forming part of the measurement of care quality.
PROMs are, however, only a start. Going a stage further, patients are starting to play an active role in the design of care pathways and helping to define desired outcomes and indicators, which form a basis for doctors’ pay and bonuses.
Dutch non-profit association Zorgbelang, which lobbies for greater patient involvement in healthcare, argues that there is no such thing as a ‘patient,’ and that people with diseases or ailments should be seen instead as stakeholders in a system devoted to broad health and wellbeing.
As part of a cultural change program, Zorgbelang has developed a process of care for groups of patients with specific conditions, placing these patients at the center of the care process. Through ongoing dialogue, patients (and caregivers) are encouraged to provide valuable input into the care design for their groups.1
A UK initiative, the Dementia Engagement & Empowerment Project (DEEP), aims to actively engage patients with dementia and representative organizations. In one innovative example, a role-play drama featuring patients with dementia and caregivers, highlighted the unpopular tendency to wheel patients backwards through hospital corridors, creating a sense of disorientation. This practice has now ceased, making a huge difference to wellbeing.2 As health apps, diagnostic devices and remote monitoring improve, self-management will become more common, making patients effectively part of the workforce.
A patient representative taking part in KPMG International’s crowdsourcing research, said: “It’s important that patients and the public are regarded as part of the workforce and that they are supported and informed as to what others in the more ‘formal’ workforce can and cannot do. Healthcare needs to truly learn to hand over responsibility (and risk) to patients in an informed and supportive way.’’3
As the examples demonstrate, engagement will not simply happen by itself; it requires appropriate systems to support shared decision-making and to measure patient input and satisfaction levels. Health leaders need to assess and mobilize the assets and capabilities of patients, caregivers and communities, and ensure that they receive the information necessary to voice informed opinions and take an active role in their care. Patients can also play a vital role in teaching and research.
When patients understand their treatment options and potential side effects, there is a strong chance that they may choose an alternative. Patients with benign prostate disease, for example, are typically offered surgery to address urinary symptoms, yet subsequently suffer from post-surgical sexual dysfunction. In one study, the simple act of explaining the risks to patients led to a 40 percent drop in operations, with patients expressing greater confidence in their final decision.4,5
Similar results were seen in female patients with abnormal bleeding from the uterus, where 20 percent fewer chose surgery once made aware of the side effects.6 And, in a randomized trial in Toronto, of patients with chest pain diagnosed as stable angina heart disease, one-fifth preferred to avoid surgical treatment.7
In an inspiring example of collaboration, parents attending the Neonatal Intensive Care Unit at Mount Sinai hospital in Toronto, are supported and educated by nurses to provide much of their babies’ care. This promotes bonding, increases skills and confidence and ensures a smoother transition to home life. Babies receiving this type of care gained more weight than those in traditional settings, with four out of five mothers choosing to breastfeed, well above the national average. Parents’ stress levels decreased and babies had a lower risk of infection and critical incidents.
One in ten citizens of the UK county of Bedfordshire experience some form of a musculoskeletal issue. Feedback from local patients and caregivers called for a more integrated approach to care, with locally accessible services tailored around a patient’s personal goals.
A new partnership of musculoskeletal experts, leading patient charities and local public and private health providers now offer a seamless service. Patients can choose care closer to home and, armed with better information, have a bigger say in their own individual care plans and pathways. With more emphasis upon measurement and outcomes, progress is monitored using patient, caregiver and family feedback, with results published.
The Netherlands-based ParkinsonNet has developed regional care communities of healthcare professionals specialized in Parkinson’s disease. With a strong focus on evidence-based practice, the network carries out research and provides doctors with training and guidelines. Patients with Parkinson’s disease are fully connected and can search the website for advice and liaise with specialists and other patients, holding online discussions.
Patients organize their own care, choose physiotherapists and invite professionals and other patients to discuss health issues. Doctors are encouraged to view patients as partners that control their own care, with support from the ParkinsonNet community.
In 2014, ParC (ParkinsonNet’s founding provider) was the first medical center in the Netherlands to negotiate a value-based contract with a health insurer, with referral volumes linked to quality indicators. Patient outcomes and satisfaction have improved significantly, with reduced hospital and nursing home admissions and a 50 percent reduction in hip fractures. Savings are estimated at US$27 million per year across the Netherlands.
1Zorgbelang Nederland website
2Mental Health Foundation website, accessed 25 August 2014
3KPMG International’s global healthcare crowdsourcing research project was conducted from March to May 2014, involving 555 healthcare leaders representing more than 50 countries.
4The effect of a shared decision-making program on rates of surgery for benign prostatic hyperplasia, Wagner E, Barrett P, Barry M, Barlow W, Fowler F, Medical Care, vol 33, no 8, pp 765–70, 1995.
5Randomised controlled trial of an interactive multimedia decision aid on benign prostatic hypertrophy in primary care, Murray E, Davis H, Tai SS, et al., BMJ.323 (7311):493–6, 2001.
6Randomized, controlled trial of on interactive videodisc decision aid for patients with ischemic heart disease, Morgan MW, Deber RB, Llewellyn-Thomas HA, Gladstone P, Cusimano RJ, O’Rourke K, Tomlinson G, Detsky AS, Journal of General Internal Medicine, vol 15, no 10, pp 685–93, 2000.
7Effects of decision aids for menorrhagia on treatment choices, health outcomes, and costs: a randomized controlled trial, Kennedy A, Sculpher M, Coulter A, Dwyer N, Rees M, Abrams K, Horsley S, Cowley D, Kidson C, Kirwin C, Naish C, Stirrat G, Journal of the American Medical Association, vol 288, no 21, pp 2701–8, 2002.